Family involvement in mental illness

October 2008 issue of Brazilian journal "Reports in Public Health" has an article about impact of involvement of family members of persons with schizophrenia.

Authors of this study looked at 11 different studies from different countries that involved family members of persons with schizophrenia.

In these different studies, family members of persons with schizophrenia received pragmatic, behavioural or cognitive-behavioural kind of training from mental health services and compared the situation with persons where the families were not involved. All the persons with schizophrenia received medication and other treatments. In some countries, the mental health professionals worked with associations of family members and provided them information and training.

It was found that involvement and training of family members reduced the relapse of the symptoms by 60% in the first year.

Need for change of paradigm

The 2008 report of World Health Statistics was released by WHO, that underlines the increasing need in the change of paradigm of organisation of health services:

The global burden of disease is shifting from infectious diseases to noncommunicable diseases, with chronic conditions such as heart disease and stroke now being the chief causes of death globally, according to a new WHO report published today. The shifting health trends indicate that leading infectious diseases – diarrhoea, HIV, tuberculosis, neonatal infections and malaria – will become less important causes of death globally over the next 20 years.World health statistics 2008 is based on data collected from WHO's 193 Member States. This annual report is the most authoritative reference for a set of 73 health indicators in countries around the world. These are the best available data and they are essential for painting the global picture of health and how it is changing.

"We are definitely seeing a trend towards fewer people dying of infectious diseases across the world," said Dr Ties Boerma, Director of the WHO Department of Health Statistics and Informatics. "We tend to associate developing countries with infectious diseases, such as HIV/AIDS, tuberculosis and malaria. But in more and more countries the chief causes of death are noncommunicable diseases, such as heart disease and stroke."The statistical report documents in detail the levels of mortality in children and adults, patterns of morbidity and burden of disease, prevalence of risk factors such as smoking and alcohol consumption, use of health care, availability of health care workers, and health care financing. It also draws attention to important issues in global health, including:Maternal mortality: in developed countries, nine mothers die for every 100 000 live births, while in developing countries the death rate is 450 and in sub-Saharan Africa it is 950.Life expectancy trends in Europe: life expectancy in eastern Europe increased from an average of 64.2 years in 1950 to 67.8 years in 2005, representing an increase of only about four
years compared with 9 to 15 years for the rest of Europe.

Health-care costs: 100 million people are impoverished every year by paying out of pocket for health care.Coverage of key maternal, neonatal and child health interventions: four out of 10 women and children do not receive basic preventive and curative interventions and at current rates of progress it will take several decades before this gap is closed.World health statistics 2008 is the official record of data produced by WHO's technical programmes and regional offices in close consultation with countries and in collaboration with researchers and development agencies. In publishing these statistics, WHO underlines continuing health challenges and provides an evidence base for strategies to improve global public health.

Chronic conditions require life-style changes that can be facilitating the change of paradigm where the affected persons are seen as a resource and are supported to organise themselves in groups and organisations that acquire information and skills for their own care. Such groups and organisaitons become partners of health services and part of multisectoral teams in helping all persons newly diagnosed with chronic conditions to take better care of themselves.

Session on sexuality: Self care Group of ASODISPIE in Piedecuesta

Activity: Meeting of participants of all disability groups (Cerebral Palsy, Down syndrome, SCI, Spina Bifida)

Date: July 2, 2008 Hour: Start: 3 PM, Finish: 4:45 PM

Meeting Place: ASODISPIE, Piedecuesta, Colombia

Number of participants: 51 participants (children and family members) were invited and 24 attended; 3 with Spina Bifida, 5 with Down Syndrome, 12 with Cerebral Palsy and 4 with Spinal Cord Injury.

This report was written by Rocio Nuñez and Ofelia Buitrago, facilitators of the project in ASODISPIE, Colombia. It has been translated into English by Marlene Wiens.

Objective: To provide orientation to people with disability and their families about important aspects of sexuality.

Session Notes:

In consideration of the importance of the topic SEXUALITY AND DISABILITY, the following were invited to the meeting: the four focus groups and their families, the health professionals working in ASODISPIE, and other members of ASODISPIE. The session was given by the psychologist, ANGELA SANCHEZ, a specialist in Sexuality and Disability from the University of Cuba and with a Masters Degree from the University of Mexico in Family and Disability.

After introducing herself to those attending, she said: “Sexuality is something that includes everyone. We all have a sexual response that is in the mind as well as in the body and when we begin our physical sexual development, our imagination is also stimulated. We begin to imagine things, to project images from things we have seen on television, from what has happened to us or from that which we consider pleasurable. In this way, our sexuality is developed. When we have a physical or developmental disability this process appears to be blocked, so we look for other options to develop a normal mentality about sexuality.

The session was called “Awakening our Senses” and it encouraged us to look at our options, to face up to our own body and to our needs. Directing herself to the participants the professional asked: “What does sexuality mean to you?” One person replied that sexuality involved the whole being, how one feels, and it does not only refer to the genitals. The professional replied that the answer was very good and continued by saying that sexuality was the experience of feeling like a man or a woman, and this feeling was initiated from the time a girl or boy is born, as evidenced by pink clothing for girls or blue for boys. In this way we tell the difference between boys and girls.

“Sexuality refers to pleasurable sensations that are long lasting. It is not just the feeling of a physical orgasm but also focuses on what I told you before, on images and pleasurable sensations. Therefore, for example, when children of three or four years of age begin to touch their genitals, they experience pleasure. When the parents or caregivers notice their pleasure they try to correct them but in a manner that is inadequate. The child takes note of this correction and becomes more attracted to the activity than is normal. I don’t want to say that they shouldn’t touch themselves, considering that touching will be part of their sexual development, but that each one of us should establish social limits with them from the time they are children, whether or not they have a disability. If we do not, a conflict will develop within the child, between what the child is feeling and the social norms.”

It is important that parents of the family or caregivers use common sense and are well informed, and that they speak to their boys and girls in a direct manner, because learning about sexuality is equally important for both males and females. However due to social limitations placed on women (today and throughout history), sexuality is treated with secrecy in girls, and there is a tendency to pay more attention to the social rules than to the person. If it is difficult for women without disability to talk about sexuality, it is even more difficult for a woman with disability and this can limit her sexual development.

Up to this point, we can conclude the following:

1. All human beings, children, youth and adults, disabled or not, have a sexual development that is demonstrated when we take pains to present ourselves in the best way possible by bathing or washing, putting on makeup, dressing ourselves, wearing nice shoes and putting on perfume. We do all of this to appear attractive and to call attention to ourselves.

2. We are men and women, disabled or not, and we should all take pains to be sufficiently sexually attractive to others. For this reason, parents and caregivers of boys and girls should teach them how to take care of themselves in regards to hygiene, personal presentation and those things that make us more attractive.

In the second part of the session, the professional talked to the participants about the possibility of procreation as a consequence of normal sexuality. She said: “There are people who, having a physical disability such as spinal cord injury, Down syndrome or any other, believe that they can not have children. This is not correct. Those who have a good erection can have them. Men whose sexual organs are immobile can not, but those who can masturbate and have an erection can have children. A medical doctor, who is a specialist in sexuality, can give you better information through special tests (of semen and other tests) to determine your capability.”

“People with mental or cognitive disabilities can also have children. In the case of people with Down syndrome there is a 50 – 50% probability that the babies are born normal even if both people have Down syndrome.” The professional continued saying that in regards to procreation, the decision lies with the couple and the families of the couple, given the responsibilities that are implicated in the decision; that it is important for the topic be discussed openly within the family and for them to give the couple the opportunity to express their own perceptions of their sensual feelings (which are an expression of their emotions); feelings that lead, in the end, to a physical and sexual response. The sexual act, which is perceived by them in the same way as others perceive it, has sensations and results not only in a physical response but also in a sexual and emotional response.

“When does a person with or without disability fall in love? Look at the example of a person who feels butterflies in the stomach and asks his/her caregivers whether they have felt these same sensations. They explain that these tickling sensations are organic changes occurring internally and that he/she may experience a variety of physical manifestations such as an erection or nervous sweating when he/she is close to a certain person; that these signs have to do with sexuality and that their physical manifestation is in response to the senses (as I said before) and is an expression of sentiments that are different for each person. The professional gave some examples for the participants to clarify and said: “It is evident when a girl with Down syndrome likes a boy because she is not discreet. She moves her hands and hair a lot, and begins to smile and to greet him effusively. It is at this point that the parents or the caregivers should know how to manage this situation and not over react because they will see much more of this physical change.

With respect to those with physical disabilities, the reaction is the same as with anyone. They smile and blush more, and are more attentive and polite. They should see this as part of their normal sexual development.” The professional added that the parents or caregivers of preadolescent youth (10 – 12 years) shouldn’t think of them as babies because they are awakening mentally to their sexuality and that they have the same rights as everyone else.

The sexual changes that occur in those with physical disability are different from those with developmental disabilities:

1. People with physical disability are variable in their sensory perception (depending on the disability). Some may feel pleasurable sensations when they are caressed or they may not feel anything at all. The person who has difficulty feeling sensation usually tries to hide it so as to not hurt his/her companion. But this is not healthy. He/she should sincerely express what he/she feels if they want to have a normal sexual relationship.

2. There are emotional implications for a person who can not have an erection due to disability as well as for his partner. In physical disability there are two types of disorders: Early ejaculation and sexual impotence. Early ejaculation can occur when the orgasm comes on so rapidly that it leaves the partner unsatisfied. Impotence occurs when there is either no erection or the erection is incomplete. These situations lead to anxiety, worry and low self esteem. Women may not have an orgasm or an insufficient orgasm during the sexual act and may not feel any pleasurable sensation with penetration. This also has emotional implications for the couple.

3. Another problem is a difficulty in forming relationships with persons of the opposite sex, disabled or not disabled. Physical disability makes some feel unattractive and inferior to others and, of course, this affects their self esteem and impedes them from starting a rewarding and pleasurable relationship with others. The professional indicated that it was important for these people to appear attractive, pleasant, organized and pretty in order to be accepted.

The professional asked those listening: “What is self esteem?” One mother responded: “Self esteem is what I think and feel about myself. If I have low self esteem it is because I don’t accept myself the way I am and because I don’t love myself.”

She asked other people in the group who gave similar responses that helped to enrich and strengthen the concept.

The professional said, “Low self esteem is an important point and people with disability are often affected by it. I can say this very openly because I have worked with people with disability for a long time and have seen that they don’t feel attractive, handsome or capable of doing important things. The family makes things worse by saying things that make them feel inferior and deflates their desire to improve. One example is, “poor thing, life has treated them poorly and now what will they do…”.These expressions reduce them even more and frustrate the development of the person with disability.

With respect to the alterations that occur with developmental disabilities, we can note the following:

1. Interpretation of sensation: They can have the same response as people with physical disabilities, that is, they may or they may not feel pleasurable sensations when stimulated.

2. Ability to recognize where one’s body stops and starts: People with a limited ability to recognize their own body boundaries, can be found in people with severe schizophrenia or in young people with infantile psychosis. They don’t know where their body stops and the body of another person begins, and can use the hand of the other person to touch themselves thus causing a rupture between themselves and their own sensations. They need to have social limits defined for them as they grow.

3. Social Limits: The person with a developmental disability may begin to masturbate at eight to ten years of age, when they start to experience pleasure while doing it, and may do it anywhere. A mother of a 15 year old boy with CP said that this was the case with her grandson and that they haven’t let him return to school. The principle of the school said it was a serious problem and that he should have psychiatric treatment in order to control his behaviour, but the psychiatrist told them that the habit could not be eliminated because it was part of normal behaviour, but that it could be controlled with medication. The professional explained to the participants that this behaviour should not be controlled by medication but with the use of social limits because it was normal for a boy to masturbate. What should be controlled was masturbation in public spaces or in spaces that are used by the family. He should do it in his own room and in private. Just because the boy has a developmental disability doesn’t mean that he can’t learn the difference between right and wrong. The problem is that we as parents or caregivers haven’t put these limits on him and we failed to do so because we believed that he didn’t have the capacity to understand the limits. We should impose limits when masturbation begins and demand normal behaviour. In this way it can be controlled without disrupting the development of normal sexual behaviour.

4. Difficulty in limiting self stimulation leading to masturbation, could lead to a psychopathic masturbation in a person who constantly engages in the behaviour all day and at any time. This behaviour should be completely irradiated because it is not part of a normal development that occurs within an appropriate age limit, time and place.

5. As in people with physical disabilities, those with developmental disabilities have difficulty relating emotionally with those of the opposite sex and because it is a little more difficult they become anxious, depressed and can develop low self esteem when their affections are not reciprocated by able bodied persons. We should not create false expectations in the boy or girl in situations that will never work out. On the contrary, we should help them to understand the kind of relationships that will work, so they don’t have difficulty with the interpretation of their own emotions and those of others.

“It is important for the caregivers of children with disability, such as parents, physiotherapists and others, to have a mature sexuality because if they have not, they can not encourage a healthy sexual development in those under their care. They should have high self esteem, good personal care skills, be confident in their self-identity and have a normal sexual development. If they have a psychological disorder or a sexual alteration such as premature ejaculation, pedophilia, inability to have an orgasm or another difficulty, they should seek professional advice from a sexual therapist, psychologist or a psychiatrist.”

One of the participants asked what pedophilia was and the professional explained that the term referred to those who use children to receive sexual pleasure.

“The caregiver should be sufficiently open-minded to provide healthy sexual orientation to those under their care. They should have the ability to set limits on the daily activities of the child, ensuring that the child is fully occupied throughout the day and making sure that the child has adult supervision. The professional emphasized this part and said that caregivers should develop a schedule that lists the child’s activities or daily routine so the child or young person with developmental disability becomes accustomed following a routine. The best results are obtained through this process.”

The professional continued by saying: “Whether we have a child with disability or not, our task is to teach our children to live independently because we will not always be here to look after them. Learning how to adapt, to take care of themselves, to resolve their own difficulties and to participate in the work around the house, helps them to become more independent, raises their self esteem and assists them to be more functional.”

“People with physical and developmental disability should have their own room or private space, their own bed in which they sleep without their parents. However, special care should be taken in the sexual management and emotional development of girls because there are sick men in this world (who may be cousins, neighbours, uncles, brothers and even fathers) who may violate and abuse them. For this reason girls should not be left alone at home, should not be sent to distant places or to poorly lit surroundings where heartless people can frighten them or cause them harm.”

The professional also spoke about personal hygiene especially in girls. “They should be taught from the age of eight or nine years about the onset of menstruation, how to place the menstrual pad, how to fold it when disposing of it and how to clean themselves, so they are prepared when menstruation arrives and are not frightened or traumatized. Girls with developmental disability may have alterations in their behaviour at this time. They may change from being passive, loving and caring to being unbearable, explosive and irritable or they may calm down. In the end, each person will follow a different course in their development. The important thing is to prepare them psychologically for the life ahead of them.”

CONCLUSION:

The talk “Awakening our Senses” was about how to live one’s sexuality with a disability:

1. Understand that masturbation is a possibility for sexuality only if and when it is done in an adequate place, in a hygienic way, at a logical time and at an appropriate age when a person is learning to explore his/her pleasure zones. It is important to note that it is not the only option for sexual development.

2. It is important for a couple with physical or a developmental disability to develop enough trust to be able to share their feelings, thoughts and desires when they are intimate. They should be able to tell their partner where they like to be touched or fondled, or when they don’t want to be intimate. Their sexual relationship should not just be limited to penetration but should include other options such as fondling, words, kisses, massages and other imaginative acts that result in agreeable and pleasurable moments.

The professional concluded the theoretical portion with the following thought:

“When I don’t see…I can touch and feel; when I don’t hear…I can see and touch; when I can’t touch…I can be touched; when I can’t see or hear…I can touch and feel; when I can’t feel sensation in my body…I can hear your words and I can touch and fondle you. Love is the centre of truth in my sexuality; love is the true pleasure.”

Questions:

The Speech Therapist asked how to know when a child with disability has been abused. The psychologist responded: “If, for example, the child who has always been able to control his/her urinary sphincter suddenly begins to wet the bed or his/her pants, or if the child refuses to go to a certain place or to be in the company of a person who has been his/her friend, these are signs that the child has been abused and it is the time to monitor the child to find out the truth.”

A person with SCI asked if a person with a physical disability and with problems achieving an erection could be helped by medication. Answer: “Yes, there are some medications for this purpose such as Viagra but it is best to consult your doctor in this regard because instead of improving the situation it can result in an erection at an inopportune time and in one does not cause pleasure.”

Another person with SCI asked if there are other methods to improve the erection. Answer: “It is important that the person is very relaxed because anxiety in the person with physical limitation causes more difficulty in getting a good erection. If your partner is very willing, you will have greater security and this will calm you and give you a better erection.”

The professional warned the participants not to use medications brought to them by neighbours or friends because they could have a disagreeable or unbeneficial effect.

Some of the participants wanted to talk personally with the speaker and thus the session was closed.

Group Dynamics

Participatory Level:
The level of participation was average because the theme caused some timidity. The participants were attentive during the session, but were shy to ask questions.

Degree of interest:
The theme generated much interest and the participants were very attentive and respectful throughout the entire session.

Opinion in General:
Greatest interest was demonstrated in the part of the session about masturbation and the imposition of social limits.

Effectiveness: The theme of this session permitted the group to learn a lot more about sexual development in people with disability, their possible options and the social limits that they should take into consideration.

Lessons Learned: It is important to understand that sexual development is present in all human beings whether or not we have a disability, and that each person should learn about it in order to develop normal sexuality.

Plan of action for the next session: Ask the parents about the workshop and the results with their children’s sexual development in the home visits.