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

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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.

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.

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.

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.

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.

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.

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.

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.