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.
Wednesday, November 12, 2008
Tuesday, October 28, 2008
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.
Monday, October 13, 2008
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.”
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:
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.
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.
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:
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:
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.
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.
Self-Mutual help groups from Brindisi Italy
Recently I was in Brindisi in south of Italy for a meeting on mental health. In this meeting, Two self-help groups of users of psychiatric services spoke about their experiences that I have translated into English to share on this blog. (Sunil Deepak)
"LOVE THE RAINBOW" GROUP
A group of users and family members of mental health services called “Ama L’Arcobaleno”, literally “Love the Rainbow” talked about their group work. Rosalia Ferrnandini, a member of the group made a presentation
This group is heterogenous and the members have different medical care needs. So they are not strictly within the goals of this blog since till now they have never discussed issues related to better understanding of their mental illness and their own medical care needs, but this is another possibility for them in the future. At the same time, this group raises some general issues that are useful for all self-help or self-care groups.
Speech of Rosalia Fernandini
I am going to read my speech as I feel that I am too agitated emotionally to remember all the things that I would like to say. Actually it is not my speech or something written by one or two persons but rather all our group members have contributed to it.
Officially our group “Love the Rainbow” was born on 2 February 2005 when 9 of us met for our first meeting. Beofre this meeting, some of us, on the suggestion of our socisal assistant, we had gone to the neighbouring city of Martina Franca, to attend some meeitngs of a similar group there. Since that experience was positive so we decided to make our own group.
Why did we start our self-mutual support group?
Francesco: “I decided to come to the meetings because I could talk and discuss problems.”
Carmelo: “I came to meet people who face similar problems that I face. People who have never faced these problems can’t understand them.”
Maria: “I like being with othger persons. After my father’s death I was sad. Teresa, one of my friends was coming to this group and I liked it.”
Vincenzo: “I like passing one and half hour with other persons.”
Penelope: “To meet persons who have same problems as I. Medicines are important but it is equally important to communicate.”
Stella: “It is like a window on the world. I used to avpoid so many things. Here in the group I feel at ease. We who have suffered so much we can’t be hypocrites.”
Teresa: “I was ill psychologically and I didn’t feel like doing any thing. I started coming here so that I won’t become completely isolated.
Antonio: “I like it when we make experiences of going around and understanding our environment.”
Manuela: “I liked the group because I felt at home here, it helped me to overcome and face my separation. It is like an anchor, a point of reference. I felt that in the group people loved me.”
Antonio: “In the group I feel free and I can talk to others.”
Teresa: “I was hoping that the group would accept me as I am. The group understood me. Slowly I feel better.”
Giuseppe: “I like talking to peopole, to listen to their stories, that serve me as examples.”
Rosalia: “I participate in the group because I belive in social relationships. For me it is important to have relationships with other persons. I thank the group for having given me this opportunity for meeting others.”
Our basic and shared rules
To be punctual: Being punctual is a sign of affection and respect for others.
Confidential: Everyone is free to tell their secrets, and this would not be possible if people didn’t have confidence that everything they say remains with us as confidential and does not go out.
Democracy: There are no hierarchies in our group, no one is superior or inferior. All decisions are taken on majority vote.
Non-judging attitude: You must never be disrespectful towards others even if you don’t share their positions and ideas.
Committment: We have discussed this rule many times because some of us didn’t accept that others didn’t come to our appointments and it was seen as “lack of committment”. Slowly we are trying to be less rigid about it to find a point of equilibrium so that we do not ask too much from others and at the same time avoid becoming indifferent to each other.
What have we done in these last three years?
We have made many cultural, artistic, educational and just for fun visits. We are attentive towards the nature and the environment. We leqarned about the history of our city and our area. We are also attentive towards health issues. We went for check ups and we attended yoga classes. We go together to cinema and theater. Our most important activity is to help each other.
What do we wish to do?
We have started a news bullettin. Some of us have written poetry and articles. We also have a sports project. We want to meet other self-mutual help groups and share ideas with them. We want information on birth control and family planning. We want to do more cultural visits.
SELF-MUTUAL HELP GROUP OF MARCO CAVALLO CENTRE OF LATIANO
"LOVE THE RAINBOW" GROUP
A group of users and family members of mental health services called “Ama L’Arcobaleno”, literally “Love the Rainbow” talked about their group work. Rosalia Ferrnandini, a member of the group made a presentation
This group is heterogenous and the members have different medical care needs. So they are not strictly within the goals of this blog since till now they have never discussed issues related to better understanding of their mental illness and their own medical care needs, but this is another possibility for them in the future. At the same time, this group raises some general issues that are useful for all self-help or self-care groups.
Speech of Rosalia Fernandini
I am going to read my speech as I feel that I am too agitated emotionally to remember all the things that I would like to say. Actually it is not my speech or something written by one or two persons but rather all our group members have contributed to it.
Officially our group “Love the Rainbow” was born on 2 February 2005 when 9 of us met for our first meeting. Beofre this meeting, some of us, on the suggestion of our socisal assistant, we had gone to the neighbouring city of Martina Franca, to attend some meeitngs of a similar group there. Since that experience was positive so we decided to make our own group.
Why did we start our self-mutual support group?
Francesco: “I decided to come to the meetings because I could talk and discuss problems.”
Carmelo: “I came to meet people who face similar problems that I face. People who have never faced these problems can’t understand them.”
Maria: “I like being with othger persons. After my father’s death I was sad. Teresa, one of my friends was coming to this group and I liked it.”
Vincenzo: “I like passing one and half hour with other persons.”
Penelope: “To meet persons who have same problems as I. Medicines are important but it is equally important to communicate.”
Stella: “It is like a window on the world. I used to avpoid so many things. Here in the group I feel at ease. We who have suffered so much we can’t be hypocrites.”
Teresa: “I was ill psychologically and I didn’t feel like doing any thing. I started coming here so that I won’t become completely isolated.
Antonio: “I like it when we make experiences of going around and understanding our environment.”
Manuela: “I liked the group because I felt at home here, it helped me to overcome and face my separation. It is like an anchor, a point of reference. I felt that in the group people loved me.”
Antonio: “In the group I feel free and I can talk to others.”
Teresa: “I was hoping that the group would accept me as I am. The group understood me. Slowly I feel better.”
Giuseppe: “I like talking to peopole, to listen to their stories, that serve me as examples.”
Rosalia: “I participate in the group because I belive in social relationships. For me it is important to have relationships with other persons. I thank the group for having given me this opportunity for meeting others.”
Our basic and shared rules
To be punctual: Being punctual is a sign of affection and respect for others.
Confidential: Everyone is free to tell their secrets, and this would not be possible if people didn’t have confidence that everything they say remains with us as confidential and does not go out.
Democracy: There are no hierarchies in our group, no one is superior or inferior. All decisions are taken on majority vote.
Non-judging attitude: You must never be disrespectful towards others even if you don’t share their positions and ideas.
Committment: We have discussed this rule many times because some of us didn’t accept that others didn’t come to our appointments and it was seen as “lack of committment”. Slowly we are trying to be less rigid about it to find a point of equilibrium so that we do not ask too much from others and at the same time avoid becoming indifferent to each other.
What have we done in these last three years?
We have made many cultural, artistic, educational and just for fun visits. We are attentive towards the nature and the environment. We leqarned about the history of our city and our area. We are also attentive towards health issues. We went for check ups and we attended yoga classes. We go together to cinema and theater. Our most important activity is to help each other.
What do we wish to do?
We have started a news bullettin. Some of us have written poetry and articles. We also have a sports project. We want to meet other self-mutual help groups and share ideas with them. We want information on birth control and family planning. We want to do more cultural visits.
SELF-MUTUAL HELP GROUP OF MARCO CAVALLO CENTRE OF LATIANO
As the name indicates, this group is made of persons who all receive medical and social services at Marco Cavallo centre of a small city called Latiano. Ms. Maria Conca of this groupo made the following presentation.
We are a new groups, just a few months old but in these few months it has become a community where intensive dialogue is taking place between the service providers and users. We try to look beyond our institutional roles to look at each other and listen to each other as persons for finding solutions to our problems as persons with psychic disturbances.
As a community we are very worried about kind of wrong information that is circulated about psichiatric disturbances. The news about criminal problems often blames depression or psychic problems as the cause of crimes. Thus general public views persons with psychological disturbances with suspicion. Once communities think like this they feel that we should be closed insides sanatoriums.
People also want us to be closed away somewhere for economic reasons. The medicines, psychotherapy, other rehabilitation services all have a cost. Ideally we need a vision of mental health for all the community and not just treatment of persons with psychic disturbances but for economic reasons, people talk of closing us in hospitals. They want us to drugged with psycho-medicines, rather than having us as responsible and active citizens. We need to take back our dignity as autnomous and free subjects, capable of taking care of ourselves and our own futures.
For this reason we need to multiply experiences like this where people meet in self-mutual help groups and helping in moving towards a mental health vision for all the communities, not to go back to the old institutional models of services.
Wednesday, June 18, 2008
Learning self-care skills
Comments from Henry Tabares, President of ASODISPIE, on learning self-care skills.
As part of our project, we met in disability groups every month. In these groups we shared our experiences, we learned from professionals and we practiced our skills. The group sessions were important to us because we learned from each other as well as from the professionals. I found that my own concept about certain things, such as catheterization, was challenged by what I heard or by what I read, and I needed to change the way I was doing them. And I have had good results from the changes I have made. But my issues are not the same as those of the next person with quadriplegia and for this reason it is important to have individual teaching as well as the teaching in a group. Teaching in a group is fine for generalities, but for specific issues the teaching is better on an individual basis.
But for people newly injured (eg. spinal cord injury) the group was essential because they can avoid the pitfalls that we fell into because of lack of teaching. And this is where the group leaders are important because they can teach them about their condition. The group is also a motivator for the newly injured person and can help them alter their perception of life after injury.
The professionals (health and social) were important to helping us build our knowledge and skills. It was important to us to have both theory and practice in our sessions. Theory is fine but is incomplete because it is only in your mind. It has to be put into practice in order to verify it and to see if it is useful. The practice is what helps us for daily life.
The teaching was not only one-way. The professionals also learned from us. This interchange usually came through practice sessions. They learnt to see us individuals and to learn about our individual needs. There is knowledge that is common to all but there also a knowledge that comes from recognizing the differences between people and how the same condition is manifested differently in each of them. This difference alters the practice of the skill between people and it is important to recognize that this difference occurs. It is important to see the person.
Information on self care does not exist here. We used materials that were made available to us through the project and we had some videos from another disability organization called PROJIMO. Actually, it would make a great project to write a manual on self-care based on what we have learned in our project.
Henry Tabares, ASODISPIE, Colombia
As part of our project, we met in disability groups every month. In these groups we shared our experiences, we learned from professionals and we practiced our skills. The group sessions were important to us because we learned from each other as well as from the professionals. I found that my own concept about certain things, such as catheterization, was challenged by what I heard or by what I read, and I needed to change the way I was doing them. And I have had good results from the changes I have made. But my issues are not the same as those of the next person with quadriplegia and for this reason it is important to have individual teaching as well as the teaching in a group. Teaching in a group is fine for generalities, but for specific issues the teaching is better on an individual basis.
But for people newly injured (eg. spinal cord injury) the group was essential because they can avoid the pitfalls that we fell into because of lack of teaching. And this is where the group leaders are important because they can teach them about their condition. The group is also a motivator for the newly injured person and can help them alter their perception of life after injury.
The professionals (health and social) were important to helping us build our knowledge and skills. It was important to us to have both theory and practice in our sessions. Theory is fine but is incomplete because it is only in your mind. It has to be put into practice in order to verify it and to see if it is useful. The practice is what helps us for daily life.
The teaching was not only one-way. The professionals also learned from us. This interchange usually came through practice sessions. They learnt to see us individuals and to learn about our individual needs. There is knowledge that is common to all but there also a knowledge that comes from recognizing the differences between people and how the same condition is manifested differently in each of them. This difference alters the practice of the skill between people and it is important to recognize that this difference occurs. It is important to see the person.
Information on self care does not exist here. We used materials that were made available to us through the project and we had some videos from another disability organization called PROJIMO. Actually, it would make a great project to write a manual on self-care based on what we have learned in our project.
Henry Tabares, ASODISPIE, Colombia
Saturday, June 7, 2008
Self Care Project in ASODISPIE, Colombia
Hello,
My name is Marlene and I am the English speaker in our project. Although I live in Canada, I am in regular contact with the project leaders in Colombia and will post their news. ASODISPIE is a Disabled People's Organization that has about 100 members of all disability types of all ages.
The project leaders are Henry the President of ASODISPIE, Oscar the treasurer, and Rocio and Ofelia the project facilitators. We have been part of the DAR/AIFO self care study for the past two years and are currently in our third year.
I am really excited about the news I received from Henry this week and would like to tell you about the fact that ASODISPIE is reaching out to a new community. This community is situated on a mountain plateau not too far from Piedecuesta, the city in which ASODISPIE is located.
Henry was invited to this plateau to help the people with disability organize because there are a large number of children with Cerebral Palsy living there. He and a group consisting of therapists, Rocio and Ofelia, have been traveling to this plateau on Saturdays. While Henry works with the leaders, the others register people with disability. Their plans are to involve them in the development of their personalized self-care plans using the same process that is currently being used in ASODISPIE.
I welcome questions and comments about the message I have posted. Also, I will continue to post information on the progress of the self care plans. Chao, Marlene
My name is Marlene and I am the English speaker in our project. Although I live in Canada, I am in regular contact with the project leaders in Colombia and will post their news. ASODISPIE is a Disabled People's Organization that has about 100 members of all disability types of all ages.
The project leaders are Henry the President of ASODISPIE, Oscar the treasurer, and Rocio and Ofelia the project facilitators. We have been part of the DAR/AIFO self care study for the past two years and are currently in our third year.
I am really excited about the news I received from Henry this week and would like to tell you about the fact that ASODISPIE is reaching out to a new community. This community is situated on a mountain plateau not too far from Piedecuesta, the city in which ASODISPIE is located.
Henry was invited to this plateau to help the people with disability organize because there are a large number of children with Cerebral Palsy living there. He and a group consisting of therapists, Rocio and Ofelia, have been traveling to this plateau on Saturdays. While Henry works with the leaders, the others register people with disability. Their plans are to involve them in the development of their personalized self-care plans using the same process that is currently being used in ASODISPIE.
I welcome questions and comments about the message I have posted. Also, I will continue to post information on the progress of the self care plans. Chao, Marlene
Wednesday, May 28, 2008
Starting a new group in Colombia
Ofelia and Rocio just told me that ASODISPIE has “multiplied”. They are going to another area of Santander, a plateau that is a bit off the beaten path, on Saturdays. There are a lot of children with Cerebral Palsy on the plateau, perhaps because they are so far away from medical care and midwifery. A group of people (family members of these kids) have formed an organization (I don’t know if they have registered with the Chamber of Commerce yet) and Henry of Asodispie is their President. He is basically getting them started. Rocio, Ofelia, Henry, Oscar and the therapists employed by Asodispie go there on Saturdays to work with the parents and children. Their plan is to duplicate the project there, although self-help groups will be difficult to form because they all live quite far from each other (it is a rural area).
This is nice news, don’t you think?
Regards,
Marlene Wiens
This is nice news, don’t you think?
Regards,
Marlene Wiens
Wednesday, May 14, 2008
Contributors for New Paradigm Blog
Are you involved some way in a self care group and you would like to post your views in New Paradigm blog?
Send some sample of your report by Email to sunil.deepakataifo.it
If we feel that the kind of issues you raise are in line with the goals of this initiative, you can become a contributing member of this blog and post your views directly. We are specially looking at contributors from different countries of Asia, Africa and south and central America and we would like persons with disabilities as contributors.
Send some sample of your report by Email to sunil.deepakataifo.it
If we feel that the kind of issues you raise are in line with the goals of this initiative, you can become a contributing member of this blog and post your views directly. We are specially looking at contributors from different countries of Asia, Africa and south and central America and we would like persons with disabilities as contributors.
Impact of Self-Care Groups on Health Professionals - from Dec'07 meeting report
If self-care groups of persons with disabilities and chronic conditions take a more active role in their own care, what impact does it have on health care and social professionals? Does it mean that their role is diminished? Does it improve the working of health and social professionals? Does it raise any specific ethical issues?
The participants in the meeting held in Rome (Italy) in December 2007 concluded that:
1. Health care professionals often do not learn about needs of persons with disabilities and chronic conditions. Thus when they receive requests related to persons with disabilities they tend to delegate to “rehabilitation” professionals or find ways to not to accept such requests.
2. Training of health care professionals tends to focus on disability or specific medical condtition and does not teach them to look at global needs of a person.
3. Health professionals may be few and overworked and thus find difficult to participate in a dialogue about paradigm shift.
4. Health professionals tend to focus more on crisis, emergencies, services provision and clincal roles rather than engage in dialogue, interact and learn.
5. Those health care professionals who do manage to engage in a dialogue for a greater role of persons with disabilities, persons with chronic conditions and/or family members in their own care and their right to take decisions about their own lives, find it improves quality of their work.
6. There are areas of health care expertise that can not be delegated to affected persons or families and health care professionals need to provide services in these areas. At the same time, there are many areas where affected persons can play a more more active role and health care professionals need to review these with self-care groups in a more open manner.
The participants in the meeting held in Rome (Italy) in December 2007 concluded that:
1. Health care professionals often do not learn about needs of persons with disabilities and chronic conditions. Thus when they receive requests related to persons with disabilities they tend to delegate to “rehabilitation” professionals or find ways to not to accept such requests.
2. Training of health care professionals tends to focus on disability or specific medical condtition and does not teach them to look at global needs of a person.
3. Health professionals may be few and overworked and thus find difficult to participate in a dialogue about paradigm shift.
4. Health professionals tend to focus more on crisis, emergencies, services provision and clincal roles rather than engage in dialogue, interact and learn.
5. Those health care professionals who do manage to engage in a dialogue for a greater role of persons with disabilities, persons with chronic conditions and/or family members in their own care and their right to take decisions about their own lives, find it improves quality of their work.
6. There are areas of health care expertise that can not be delegated to affected persons or families and health care professionals need to provide services in these areas. At the same time, there are many areas where affected persons can play a more more active role and health care professionals need to review these with self-care groups in a more open manner.
Tuesday, May 13, 2008
Recognition of Role of Self Care Groups - from Dec.07 report
Do health care professionals recognise the specific role of self-care groups? Do experienced self-help groups play a formal role in providing support to health care professionals? What roles can organisations of persons with chronic conditions and organisations of persons with disabilities play in a multi-sectoral health team?
In the meeting held in Rome in December 2007, the group came to the following conclusions:
1. Persons with disabilities, persons with chronic conditions and/or family members can become experts in some aspects of self care. They can advice and support other persons and families dealing with disabilities or chronic conditions in their lives in ways that no other health professional can do. They know about living with their conditions, they understand specific challenges that persons and families face in ways that no other experts can ever understand.
2. For some issues persons with new disabilites or chronic conditions or families can relate to the group and ask opinions and questions in ways that are not possible in health care services.
3. Groups can be allies of health professionals and make the bridge between services and individuals and families for effective communication. Such groups should be part of all multi-sectoral teams dealing with the related disabilities or conditions.
In the meeting held in Rome in December 2007, the group came to the following conclusions:
1. Persons with disabilities, persons with chronic conditions and/or family members can become experts in some aspects of self care. They can advice and support other persons and families dealing with disabilities or chronic conditions in their lives in ways that no other health professional can do. They know about living with their conditions, they understand specific challenges that persons and families face in ways that no other experts can ever understand.
2. For some issues persons with new disabilites or chronic conditions or families can relate to the group and ask opinions and questions in ways that are not possible in health care services.
3. Groups can be allies of health professionals and make the bridge between services and individuals and families for effective communication. Such groups should be part of all multi-sectoral teams dealing with the related disabilities or conditions.
Using Skills for Self-Care: from Dec.07 report
Do self-help groups use the knowledge and skills they learn for their own care? Are persons actually using the newly learnt skills? What factors help people to be more active in their own care? Are there any areas in which persons require more support from health care professionals? How can you encourage people to use the newly acquired knowledge and skills in their self-care?
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Learning about self care does not mean that these newly acquired skills will be authomatically used in by the persons. The skills may be used some times. These skills do not substitute the role of health care services.
2. Some times skills may be related to other resources that may not be available and for these need, persons continue to look for support from health care services.
3. Skills of self care as well as the whole process of coming together as a group can lead to empowerment, in terms of greater awareness of rights, about issues affecting persons’ lives and for collective action to fight against barriers and to find answers to unmet needs.
4. Forming a group for self-care focusing on health needs can be a starting point for looking at other areas and needs of persons’ lives. There may be need to network with other similar groups at local, national, regional and international level. Networking with persons and organisations of persons with other kinds of disabilities or chronic conditions is also required.
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Learning about self care does not mean that these newly acquired skills will be authomatically used in by the persons. The skills may be used some times. These skills do not substitute the role of health care services.
2. Some times skills may be related to other resources that may not be available and for these need, persons continue to look for support from health care services.
3. Skills of self care as well as the whole process of coming together as a group can lead to empowerment, in terms of greater awareness of rights, about issues affecting persons’ lives and for collective action to fight against barriers and to find answers to unmet needs.
4. Forming a group for self-care focusing on health needs can be a starting point for looking at other areas and needs of persons’ lives. There may be need to network with other similar groups at local, national, regional and international level. Networking with persons and organisations of persons with other kinds of disabilities or chronic conditions is also required.
Learning Self-Care Skills - from Dec.07 report
How can self-help groups learn more about their own health care needs? Are there any self-learning manuals or books? Can health care and social professionals provide knowledge and skills to them about their own health care needs? Is theoretical knowledge enough?
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Usually health care professionals are too busy and do not have time for interacting with persons with disabilities/persons with chronic conditions. Perhaps they feel threatened by their ideas of self care? However, those that do start interacting as facilitators and not as prescribers, seem to appreciate this role.
2. Some theoretical knowledge is fine but it should be linked with practical on-the-hands training. Learning sessions need to be interactive.
3. Persons may not be comfortable in mixed gender groups or mixed age groups to discuss all their body needs. Training sessions need to have the possibility of organising meetings limited to only women or only men or only young adults, etc. according to their needs.
4. Those persons who had long experience of living with a disability or chronic condition requiring continuing or periodic medical care, may also learn new ideas and skills in such learning sessions.
5. Finding simple ways to express ideas and information that are understable to non professionals is not always easy. Not all professionals may be good facilitators for these learning sessions. Support from proper and simple learning materials may be needed that is sensitive to specific living and cultural contexts.
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Usually health care professionals are too busy and do not have time for interacting with persons with disabilities/persons with chronic conditions. Perhaps they feel threatened by their ideas of self care? However, those that do start interacting as facilitators and not as prescribers, seem to appreciate this role.
2. Some theoretical knowledge is fine but it should be linked with practical on-the-hands training. Learning sessions need to be interactive.
3. Persons may not be comfortable in mixed gender groups or mixed age groups to discuss all their body needs. Training sessions need to have the possibility of organising meetings limited to only women or only men or only young adults, etc. according to their needs.
4. Those persons who had long experience of living with a disability or chronic condition requiring continuing or periodic medical care, may also learn new ideas and skills in such learning sessions.
5. Finding simple ways to express ideas and information that are understable to non professionals is not always easy. Not all professionals may be good facilitators for these learning sessions. Support from proper and simple learning materials may be needed that is sensitive to specific living and cultural contexts.
Identifying Health Care Needs - comments from Colombia
Marlene Wiens translated the comments from Rocio and Ofelia of ASODISPIE in Piedecuesta, Colombia:
1. Some of us, who have long experience of living with our conditions and repeated experiences with health services, we may already have lot of knowledge and skills needed for our own medical care. We need to acknowledge and value these knowledge and skills.
Comments: Some people have good knowledge about some things but not all knowledge is correct. In other persons there has been so much over-protection that has resulted in a lot of conformity and it is difficult for them to change. Also, the cultural influence affects the attitude of family members and people with disability. At this moment they are in a point of reflection and they are looking at change. Some have recognized that their children can do many things and people with disability have recognized many abilities in themselves.
2. Understanding and learning about the body processes and principles of self care is part of controlling our own lives and taking control of decisions that influence quality of our lives. We may be used to delegating this responsibility to health care professionals and others. Some of us may not feel comfortable with taking greater responsibility about our own care. This is equally legitimate. At the same time, for those of us who wish, we need the possibility of learning more about ourselves, our bodies and about different skills needed for our care.
Comments: The 2 types exist in Asodispie. Some want to do something and they help themselves to achieve better health. But others think that the doctor is the only person responsible, or they give the responsibility to family members. But the best is to learn more about our bodies and this will improve our quality of life. The majority in our groups now understand that self care is their own responsibility. The reluctant ones were motivated by other persons more advanced. As a result of sharing experiences they noticed that they couldn’t stay in ignorance. Also practicing skills during the meetings helped to stimulate people.As the process continues, we need to persevere so they can learn to overcome their difficulties. The personal decision is very important in reaching this point, but the influence of the group is key.
3. We are human beings and not just bodies with disabilities. Often health professionals ignore our global dimension and focus only on our medical care needs. Our own interaction and sharing of experiences can give us the opportunity to look at our global dimension, identify areas not being addressed by health professionals and sought answers to our unmet needs.
Comments: It has been our experience that professionals see the person with disability as an object of health and not as a person. This results in resistance to go to medical clinics. But as the process continues, the professionals are starting to see people in a more holistic manner. This is especially true of those who work with Asodispie. We believe that little by little the professionals in the clinics will see disabled people in a different way as well.Self help groups are important to provide the emotional and psychological support that the health professionals do not. We need to keep working with the other parts of life that are not related with health so people see themselves as holistic people.
1. Some of us, who have long experience of living with our conditions and repeated experiences with health services, we may already have lot of knowledge and skills needed for our own medical care. We need to acknowledge and value these knowledge and skills.
Comments: Some people have good knowledge about some things but not all knowledge is correct. In other persons there has been so much over-protection that has resulted in a lot of conformity and it is difficult for them to change. Also, the cultural influence affects the attitude of family members and people with disability. At this moment they are in a point of reflection and they are looking at change. Some have recognized that their children can do many things and people with disability have recognized many abilities in themselves.
2. Understanding and learning about the body processes and principles of self care is part of controlling our own lives and taking control of decisions that influence quality of our lives. We may be used to delegating this responsibility to health care professionals and others. Some of us may not feel comfortable with taking greater responsibility about our own care. This is equally legitimate. At the same time, for those of us who wish, we need the possibility of learning more about ourselves, our bodies and about different skills needed for our care.
Comments: The 2 types exist in Asodispie. Some want to do something and they help themselves to achieve better health. But others think that the doctor is the only person responsible, or they give the responsibility to family members. But the best is to learn more about our bodies and this will improve our quality of life. The majority in our groups now understand that self care is their own responsibility. The reluctant ones were motivated by other persons more advanced. As a result of sharing experiences they noticed that they couldn’t stay in ignorance. Also practicing skills during the meetings helped to stimulate people.As the process continues, we need to persevere so they can learn to overcome their difficulties. The personal decision is very important in reaching this point, but the influence of the group is key.
3. We are human beings and not just bodies with disabilities. Often health professionals ignore our global dimension and focus only on our medical care needs. Our own interaction and sharing of experiences can give us the opportunity to look at our global dimension, identify areas not being addressed by health professionals and sought answers to our unmet needs.
Comments: It has been our experience that professionals see the person with disability as an object of health and not as a person. This results in resistance to go to medical clinics. But as the process continues, the professionals are starting to see people in a more holistic manner. This is especially true of those who work with Asodispie. We believe that little by little the professionals in the clinics will see disabled people in a different way as well.Self help groups are important to provide the emotional and psychological support that the health professionals do not. We need to keep working with the other parts of life that are not related with health so people see themselves as holistic people.
Self Care Groups - Comments from ASODISPIE, Piedecuesta, Colombia
Marlene Wiens translated the comments from Rocio and Ofelia of ASODISPIE (Piedecuesta, Colombia) about setting up of self-care groups:
1. Our coming together as persons with disabilities, persons with chronic conditions and/or their family members is a key first step in the process for the paradigm shift that becomes an active subject in ensuring participation, continuity and sustainability.
Comments: Meeting together helps to build participation and meetings should continue in the future. The interaction helps participants to realize the importance of the issues they are discussing. Empathy and trust develops and this leads to expression of experiences and reflection on their lives.When I asked Rocio and Ofelia the difference between “integración” and “participación” they said that “integración” is more like attendance and this is also a goal of Asodispie – to increase the attendance of their membership at meetings. But participation is something that is developed in stages.
2. Many of us do not require any specific continuing or periodic medical care. For us disability or the chronic condition may be part of our lives.
Comment: Yes, it is true, but it is important to learn about our condition in order to prevent secondary problems and to have a better quality of life.
3. Forming a group is not automatic and needs care and facilitation in the beginning. An external facilitator can be useful in the beginning. However with greater experience and capacity building, we as persons with disabilities and/or persons with chronic conditions can also play this role.
Comments: An external facilitator is important at the beginning to orientate and to review the work being done so that a productive work can be achieved. But since the facilitators will not always be there, it is important that the PWD become facilitators so the work can go on. The ideal is that the group will take their own actions. But they will still need someone to coordinate and to orientate them and these people can be from within the group. But there needs to be funds to encourage people to dedicate the time to do the coordination. In this year, the current facilitators (Rocio and Ofelia) should delegate responsibilities so that the leaders can have direction and also to Asodispie so they learn how to find resources.
4. Forming a group, sharing experiences and ideas can be a powerful tool to break our isolation, to identify and access opportunities and strategies. Groups have to be based on participation, reciprocal confidence and relationships, and this requires time. Forming groups can pass through ups and downs, so it is important not to give up but to resist and find ways of overcoming initial difficulties.
Comments: The groups provide the possibilities to achieve more things like activities and resources. Our groups had their own characteristics in terms of the way they matured – the time they took to establish relationships with each other prepared them to confront issues. The participants share common interests, which is a powerful tool and can lead to achievement of future benefits. All groups have their problems but all are active, they all have their moments of inactivity and passivity but that is normal.
5. As persons with disabilities, with chronic conditions and as family members, we may face different obstacles to find a place for our meetings, barriers to travel and access meeting places, barriers to effectively participate and share in the groups. All these need to be acknowledged so that satisfactory solutions can be sought that respect our dignities as human beings.
Comment: Each group has their own difficulties, depending on the disability. It is one of the most obvious issues that we observe and that we always take into account to have effective meetings.
6. As a group we can liaise and advocate for respect of our human rights.
Comments: First we need to come together, to act as a group in Asodispie, to understand and know our own organization and our rights. And after that, we can work with people outside of Asodispie, which will give us more force.
1. Our coming together as persons with disabilities, persons with chronic conditions and/or their family members is a key first step in the process for the paradigm shift that becomes an active subject in ensuring participation, continuity and sustainability.
Comments: Meeting together helps to build participation and meetings should continue in the future. The interaction helps participants to realize the importance of the issues they are discussing. Empathy and trust develops and this leads to expression of experiences and reflection on their lives.When I asked Rocio and Ofelia the difference between “integración” and “participación” they said that “integración” is more like attendance and this is also a goal of Asodispie – to increase the attendance of their membership at meetings. But participation is something that is developed in stages.
2. Many of us do not require any specific continuing or periodic medical care. For us disability or the chronic condition may be part of our lives.
Comment: Yes, it is true, but it is important to learn about our condition in order to prevent secondary problems and to have a better quality of life.
3. Forming a group is not automatic and needs care and facilitation in the beginning. An external facilitator can be useful in the beginning. However with greater experience and capacity building, we as persons with disabilities and/or persons with chronic conditions can also play this role.
Comments: An external facilitator is important at the beginning to orientate and to review the work being done so that a productive work can be achieved. But since the facilitators will not always be there, it is important that the PWD become facilitators so the work can go on. The ideal is that the group will take their own actions. But they will still need someone to coordinate and to orientate them and these people can be from within the group. But there needs to be funds to encourage people to dedicate the time to do the coordination. In this year, the current facilitators (Rocio and Ofelia) should delegate responsibilities so that the leaders can have direction and also to Asodispie so they learn how to find resources.
4. Forming a group, sharing experiences and ideas can be a powerful tool to break our isolation, to identify and access opportunities and strategies. Groups have to be based on participation, reciprocal confidence and relationships, and this requires time. Forming groups can pass through ups and downs, so it is important not to give up but to resist and find ways of overcoming initial difficulties.
Comments: The groups provide the possibilities to achieve more things like activities and resources. Our groups had their own characteristics in terms of the way they matured – the time they took to establish relationships with each other prepared them to confront issues. The participants share common interests, which is a powerful tool and can lead to achievement of future benefits. All groups have their problems but all are active, they all have their moments of inactivity and passivity but that is normal.
5. As persons with disabilities, with chronic conditions and as family members, we may face different obstacles to find a place for our meetings, barriers to travel and access meeting places, barriers to effectively participate and share in the groups. All these need to be acknowledged so that satisfactory solutions can be sought that respect our dignities as human beings.
Comment: Each group has their own difficulties, depending on the disability. It is one of the most obvious issues that we observe and that we always take into account to have effective meetings.
6. As a group we can liaise and advocate for respect of our human rights.
Comments: First we need to come together, to act as a group in Asodispie, to understand and know our own organization and our rights. And after that, we can work with people outside of Asodispie, which will give us more force.
Creating Self-Care Groups - from Dec.07 report
How do you set up self-help groups? Under this area we are looking how persons affected with a chronic condition or persons with disability requiring regular health care support, set up a self-help group. How can you facilitate setting up of self-help groups? How do self-help groups develop over a period of time? How do they deal with conflict?
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Coming together as group of persons with disabilities, of persons with chronic conditions and/or their family members is a key first step in the process for the paradigm shift that becomes an active subject in ensuring participation, continuity and sustainability.
2. Many persons with disabilities do not require any specific continuing or periodic medical care. For them disability may be part of their lives.
3. Forming a group is not automatic and needs care and facilitation in the beginning. An external facilitator can be useful in the beginning. However with greater experience and capacity building, persons with disabilities and/or persons with chronic conditions can and should also play this role.
4. Forming a group, sharing experiences and ideas can be a powerful tool to break isolation, to identify and access opportunties and strategies. Groups have to be based on participation, reciprocal confidence and relationships, and this requires time. Forming groups can pass through ups and downs, so it is important not to give up but to resist and find ways of overcoming initial difficulties.
5. Persons with disabilities, persons with chronic conditions and family members, may face different obstacles to find a place for meetings, barriers to travel and access meeting places, barriers to effectively participate and share in the groups. All these need to be acknowledged so that satisfactory solutions can be sought that respect dignity of persons.6. Once groups are formed, they liase and advocate for respect of their human rights.
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Coming together as group of persons with disabilities, of persons with chronic conditions and/or their family members is a key first step in the process for the paradigm shift that becomes an active subject in ensuring participation, continuity and sustainability.
2. Many persons with disabilities do not require any specific continuing or periodic medical care. For them disability may be part of their lives.
3. Forming a group is not automatic and needs care and facilitation in the beginning. An external facilitator can be useful in the beginning. However with greater experience and capacity building, persons with disabilities and/or persons with chronic conditions can and should also play this role.
4. Forming a group, sharing experiences and ideas can be a powerful tool to break isolation, to identify and access opportunties and strategies. Groups have to be based on participation, reciprocal confidence and relationships, and this requires time. Forming groups can pass through ups and downs, so it is important not to give up but to resist and find ways of overcoming initial difficulties.
5. Persons with disabilities, persons with chronic conditions and family members, may face different obstacles to find a place for meetings, barriers to travel and access meeting places, barriers to effectively participate and share in the groups. All these need to be acknowledged so that satisfactory solutions can be sought that respect dignity of persons.6. Once groups are formed, they liase and advocate for respect of their human rights.
Identifying health care needs - From Dec.07 Report
How do self-help groups identify their health care needs? Do persons with a chronic condition or persons with disability have knowledge about their own health care needs? Do persons with long standing condition have more knowledge and skills about their own health care? How can they identify and understand their own health care needs?
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Some persons with disabilities/chronic conditions and families, who have long experience of living with their disabilities/conditions and repeated experiences with health services, may already have lot of knowledge and skills needed for their own medical care. We need to acknowledge and value these knowledge and skills.
2. Understanding and learning about the body processes and principles of self care is part of controlling persons’ own lives and taking control of decisions that influence quality of their lives. They may be used to delegating this responsibility to health care professionals and others. Some of them may not feel comfortable with taking greater responsibility about their own care. This is equally legitimate. At the same time, for those persons who wish, they need the possibility of learning more about themselves, their bodies and about different skills needed for their own care.
3. Persons are human beings and not just bodies with disabilities. Some times health professionals ignore global dimension of persons and focus only on their medical care needs. Their own interaction and sharing of experineces can give them the opportunity to look at their global dimension, identify areas not being addressed by health professionals and sought answers to their unmet needs.
In the meeting held in Rome in December 2007, the group reached the following conclusions:
1. Some persons with disabilities/chronic conditions and families, who have long experience of living with their disabilities/conditions and repeated experiences with health services, may already have lot of knowledge and skills needed for their own medical care. We need to acknowledge and value these knowledge and skills.
2. Understanding and learning about the body processes and principles of self care is part of controlling persons’ own lives and taking control of decisions that influence quality of their lives. They may be used to delegating this responsibility to health care professionals and others. Some of them may not feel comfortable with taking greater responsibility about their own care. This is equally legitimate. At the same time, for those persons who wish, they need the possibility of learning more about themselves, their bodies and about different skills needed for their own care.
3. Persons are human beings and not just bodies with disabilities. Some times health professionals ignore global dimension of persons and focus only on their medical care needs. Their own interaction and sharing of experineces can give them the opportunity to look at their global dimension, identify areas not being addressed by health professionals and sought answers to their unmet needs.
Subscribe to:
Posts (Atom)
