Emotional support for the care team and children with visual impairment or blindness

The basis of our activity at THEA is the deep understanding that vision affects all areas of development, it is the organizing sense that pushes us to connect with the environment, stimulates curiosity and through which we perceive and understand the world. Vision affects motor, cognitive and behavioral ability, the severity and nature of visual impairment, are the important factors in the effect of visual impairment on development.
In early childhood, toddlers explore their physical and human environment by virtue of curiosity and produce their inherent activity from birth. The first agents of the investigation are the "close" senses of touch, taste, smell, and then also join in listening, looking and imitating. While seeing children can adapt to the environment and infer hearing and vision at the same time, a child with visual impairment will need to mediate the adult in order to reach an understanding of the situation in which he is located. Babies with blindness or visual impairment have fewer opportunities for learning, due to the disability they show less instalcting and tend to be more static, have difficulty coping with several stimuli at the same time and for learning needs a adapted environment.
Elia sees great importance in encouraging children to independence and gaining confidence and a sense of competentness, which will give children in the future and adulthood a better ability to cope. Therefore, therapeutic intervention, treatment and guidance from the first year of the child's life with visual impairment or blindness is critical and of great value.
Adapting the living environment and educational and treatment space is essential for promoting children with blindness or visual impairment, we invite and encourage children, to investigate, to curiosity, and to participate in daily life. In this way, the child acquires new skills and abilities and we allow him to develop and learn.
Alongside the rehabilitation and treatment response for children in the fields of vision, motors, cognition, language and communication, as well as in social fields, it is important for us at the ELIA to provide an emotional response to the child, his family and the caregiver's staff. In order to understand the reasons for the emotional response more deeply, we will address and explain the emotional needs of all the "components" of the puzzle.
Kids
It
is known and documented in literature that sooth-emotional development is essential to maintaining a full and happy life. (Dowling, 2014; Sacks, Kekelis, & GaylordRoss, 1992; Umberson & Montez, 2010; Webster & Roe, 1998).
Our approach at THEA is based on the understanding that vision is in all areas of development and therefore it is expected that children with visual impairment or blindness will have challenges and difficulties during their development and adolescence. Due to the visual impairment there is a decrease in the quality and amount of visual feedback from the environment, the children experience less access to what is happening around them and therefore there are fewer opportunities for them to develop skills and normative/typical social and emotional behavior, they are more dependent on their environment and learning through mediation . (Roe, 2008)
In addition to the visual impairment, a significant portion of children have additional physical and/or cognitive impairments. These children need a broader emotional response in order to achieve full emotional maturity and to prevent situations of social seclusion and emotional problems. (Fazzi et al., 1999; Gal & Dyck, 2009., Pinquart &Pfeiffer, 2012).
Various studies indicate that difficulty in eye contact and visual attention play a major role in delayed emotional development in babies with visual impairment. Then their parents may respond (or rather not respond) depending on the emotional eclipse. Poor vision limits the selection of facial expressions and nonverbal communication of the baby that is commonly translated in the parents or caregiver as a desire to generate social interest or communication. In response to the absence or lack of eye contact or the creation of nonverbal communication on the part of the baby, the parent or caregiver may reduce the interaction with the baby and create a negative reaction cycle. (Loots, Devise, & Sermijn, 2003)
The conclusion is that sooth-emotional support is one of the most important goals in therapeutic intervention in infants and children with visual impairment or blindness, it gives them tools to cope and understand the reactions or lack of responses of their children (Chen, 2014; Roe, 2008).
Parents and Families
Th
e diagnosis of visual impairment usually has an immediate and lasting effect on the whole family. Although the reactions can be varied, usually the first diagnosis causes a lot of stress in the family. There may be stages of shock/refusal, seclusion/grieving, and damage to self-image (feeling guilty). Parents should be both the protectors and the mediators between the baby and the world and enable optimal conditions for the full development of their child. In order to enable parents and family to adapt to the new life and their important new role, emotional support is needed.
Tuttle ,1986)). In fact, when a baby with visual impairment is born, a family is also born to a child with visual impairment. There are new challenges for parents and the whole family and without help they may collapse under the new burden. As family members structure the visual impairment and their role, they can fulfill these functions without negative feelings. (Reinhardt, Boerner, & Horowitz, 2006)
Although ch
ildren with visual impairment receive extensive treatments in the field of vision, language, communication, physiotherapy, etc., in many cases the need for emotional treatment of their parents and family is not treated specially. Without proper treatment, the feelings of guilt and feelings of helplessness (e.g. from the slow progression of the baby) can overcome the "good" feelings of love for the baby and responsibility for it. One example of this is the lack of development of emotional communication on the part of the baby (due to the effect of the visual impairment on his ability to learn the appropriate expressions and jastas) this situation may be interpreted by the parents as a lack of "love" to them on the part of the baby (.). Silverstone, 2000
The therapists
According to Dr. Ariella Vaniel, a clinical psychologist, the task of the caregiver in the care of parents of children with special needs, is to be constantly with "two eyes open: one on the needs of the child, and the other on the needs of the parent in itself". This tension is joined by additional tensions that the therapist must hold and contain as part of the treatment. One of them is the tension between action and observation: on the one hand, the caregiver should encourage the parents to act and do meaningful action in relation to the care of the child and in relation to themselves, and on the other hand to allow reflection and stay at the given moment, while stopping for chapters from running towards achieving more and more goals for the benefit of the child. Another tension that the therapist must hold in the treatment room is that between seeing and acknowledging the difficulties faced by the parents and holding hope for the parents and with them. The task of the therapist is to keep these two ends 'alive', to contain the contradictions between them, and to share them with the patient, in our case the parents at the right time and according to the personal pace.
The ability to provide a rehabilitation solution for children with developmental and sometimes severe medical disabilities and the interface of a parental therapist requires daily emotional investment from the staff. Such an investment causes burnout on the one hand and the need to strengthen and increase self-worth while providing emotional and moral support on the other. A well-known and studied phenomenon is what is known in The Burnout after a long time as a caregiver for sick or in deficits the therapist himself "burned". This means that sometimes the great efforts of therapists are "rewarded" with progress so small that he does not see the benefits of his work and loses his abilities as a therapist. The children learn to rely over time on the caregiver and anything that undermines this relationship negatively affects the development of the children. Proper emotional support can provide tools to cope with the difficulties that arise in rehabilitation work, prevent burnout and emotional and personal difficulties, and establish ways of communication that enable coping with rehabilitation tasks in the best possible way.

Information sources

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British Journal of Visual Impairment
2017, Vol. 35(1) 29–43
© The Author(s) 2016
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DOI: 10.1177/0264619616677171
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https://journals.sagepub.com/doi/pdf/10.1177/0264619616677171

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