Patient Education and Teaching: Down Syndrome

Patient education is vital in helping patients in living with a disease and attaining an improved health. It has also become evident that patient education is one of the most vital aspects of care that is offered by nurses across the world. Teaching and education process is focused on patients, providing his/her family with caretaking skills along with health literacy aspects that would positively affect patient’s condition. It is important to note that effective education of patient’s family is essential for improving results of patients, especially during a period when aggravation is observed and a patient stays at home. In this case, a Bosnian family has given birth to a child suffering from a Down syndrome. Down syndrome can be explained as a condition whereby an individual has more chromosomes than a human is supposed to have. Children with Down syndrome have an extra sequence of chromosomes and the extra copy alters the manner in which the body and brain grow. This can result into mental and physical problems during the baby’s development. It would be vital to prepare a teaching plan that would assist the family in handling their sick child through taking care of the child at home, explaining likelihood of having another child with Down syndrome, providing instructions of breast-feeding such a child. Such a teaching plan would also tell about psychological issues that the family may face and explain diagnostic tests that would be available for those parents with genetic disorders and various cultural considerations.

Care of the Newborn at Home

In teaching a parent the ways of taking care of a child with Down syndrome, it is vital to let them know about Down syndrome and living with it. Down syndrome has emerged as a long‑lasting condition and medical services early in a child’s life would play a vital role in assisting the baby to improve their physical and intellectual capabilities. Services would assist the child in development. Such services include speech, physical and occupational therapy that are usually offered through initial intervention initiatives. Parents who have a child with Down syndrome should play an important role in assisting the child to attain full potential. At home, a parent should be patient and ensure that a young baby learns things. That can be achieved through a number of practices. One of those practices involves walking along with several other motor development initiatives. The Bosnian family should assist the baby to strengthen his or her muscles by directed plays. As the child grows up, that can be best done by a physical therapist at home in order to design the exercise session that would assist the child to maintain and develop his/her capabilities together with physical strength. As the child grows at home, self-feeding can really assist in their development.

The Bosnian parents should help their child to eat on his or her own by staying together during meals. It is crucial to utilize gradual steps that would assist the child to eat independently. Research has indicated that parents with babies suffering from Down syndrome should start with giving a chance their babies to eat using their fingers and providing them with thick liquids that they can drink. Just like with any other child that has just been born; the Bosnian family should realize that their newborn needs to be fed, diapered, held, dressed and talked to, loved and played with. It would be crucial to note that the child may suffer from related illnesses that should be monitored every now and then. Physical therapy at home would help the newborn to develop strong muscles since weak muscles may result into difficulties with rolling over, sitting up and walk as they grow up. It would be also crucial to realize that the child may suffer from a heart defect. In order to diagnose such defect it is necessary to regularly refer to a doctor for check-up. The parents should also consider monitoring the child’s swallowing behavior whenever they are close to him or her at home in order to determine any problems that can be treated through surgery. It is important to provide the bay with medicine in case they have heart defects or any other medical problems. Those are some of the most important points that Bosnian family is to consider when raising their newborn at home.

Likelihood of Having Another Child with Down Syndrome

Research has provided that the chance of having another child with Down syndrome after the first child with a similar condition is only 1%. However, in case one is planning to have another baby after the firstborn suffered from Down syndrome, it would be advisable to see a doctor for check-up. Research has indicated that for couples that bear a child with Down syndrome with a translocation of trisomy 21, the chance of having another one with Down syndrome is usually high in the future pregnancies. This occurs due to the fact that one of the parents could be having a balanced carrier element that causes the translocation. Moreover, the chances of transferring such a translocation would depend on sex of that individual that carries the distorted chromosome 21. Most importantly, in case the father is proven to be a carrier, then the risk of translocation would be only 3%. On the other hand, in case the mother is the carrier, then the risk of translocation that would result into Down syndrome would be 12% (Bull, 2011).

Therefore, doctors advise that in all situations of Down syndrome, and especially in cases of translocation of trisomy 21, families need to acquire genetic counseling. The Bosnian family has to do it as well. That would play a huge role in determining the risk of bearing another child suffering from Down syndrome. Most importantly, research has proven that as a woman’s egg becomes old with time, there is a greater risk of incorrect division of chromosomes. In other words, it is clear that the risk of getting a child with Down syndrome tends to increase with one’s age. More researches have proven that people suffering from Down syndrome rarely reproduce. It has become evident that from 15% to 30% of women that have trisomy 21 are fertile but have a 50% risk of bearing a child suffering from Down syndrome. However, evidence has not been provided for men suffering from Down syndrome fathering a baby. It has also become clear that 80% of all children born with Down syndrome are born by women under 35 years of age. In other words, evidence has provided that couples who have bared a child with Down syndrome tend to have a low risk (only 1%) of bearing another child suffering from the same illness.

Breast-Feeding a Newborn with Down Syndrome

The Bosnian family should consider the various instructional facts of breast-feeding a child suffering from Down syndrome. The newborn child with Down syndrome can be fed with breast milk due to the fact that breast milk is usually simpler to digest than the common formulas of all kinds. Moreover, infants that are fed on breast milk tend to be less predisposed to respiratory difficulties and other health problems. They also have decreased risk of getting otitis media, allergy or other atopic illnesses. Furthermore, feeding an infant on breast milk enhances effective oral motor growth that becomes the basis of improved speech. In addition, the psychological advantage that emerges from the bond between mother and a child is vital during a period when the child is suffering from Down syndrome. In case the infant finds it hard to suck milk directly from the mother’s breasts, any expressed milk from the breasts of the mother can be given by other means and that would be beneficial in improving the child’s health along with the parent’s emotional development. It is important to note that sucking problems that are associated with hypotonic or even cardiac problems can render breast feeding difficult at the initial stages. In such a situation, the parent can breastfeed the infant using expressed milk through other relative means including nursing supplementary or bottles.

Artificial feeding can also be done through gavages that involve forced feeding through a tube that can be directed to the child’s stomach. The infant’s sucking capabilities would rise in the following weeks and the infant would end up sucking effectively from the mother’s breasts. Most importantly, an effective nursing supplementary can be utilized in order to encourage an infant to suck the milk from the mother’s breast. Other relative aspect to consider is the weight of the child suffering from Down syndrome. Research has provided that in case the weight of the child is not increasing, then considerations of partial supplementation of special substances or extra expressed milk from the mother’s breast should be made. For the children that seem sleepy during the first weeks of birth feeding only on their demand would not be enough; hence, there is a need to awaken them in order to feed them for at least every 3 hours. Moreover, the parent would need to slowly pump her breasts in order to stimulate milk production. These are some of the instructions that have been proven important in breastfeeding a baby suffering from Down syndrome.

Psychosocial Issues in the Family

Considering a family systems aspect, relational life offers a key ecological formation whereby children with Down syndrome are brought up. Moreover, the family system can be affected by attributes of every person’s elements in the family relationships and family perceptions of those elements. Thus, the birth of a baby with Down syndrome is likely to affect a family system both psychologically and socially. Some of those effects are related to the likelihoods that that baby would show cognitive or behavioral phenotypes that can be regarded as typical of those babies with Down syndrome. Such phenotypes include particular patterns of both strengths and weaknesses. Those can be notable in terms of the baby’s information processing, expressive language, motor skills, motivation or receptive skills among many other aspects.

Such behaviors would appear to have great effects on the whole family. Some researchers indicate that stress would be an outcome of giving birth to a child suffering from Down syndrome due to parenting roles and emotional responses. Such parents are likely to feel isolated and overwhelmed with many responsibilities of raising a child with Down syndrome unlike other parents raising healthy and strong kids. Mental health along with psychological functioning are also key features in raising a child with Down syndrome. Such families feel depressed, lack self‑acceptance and are full of anxiety of having another child because they are afraid that it will also suffer from the same illness. In other words, it would be important for the Bosnian family to realize the best ways to handle both psychological and social effects of bearing a child suffering from Down syndrome.

Diagnostic Tests Available for Parents

There are various diagnostic tests that are available for the parents with genetic disorders and can be used in order to prevent disorders of a child in advance. Most diagnostic tests are done after positive screening practice in attempts to confirm that a child is diagnosed with Down syndrome. The various types of diagnostic tests include the famous chorionic villus sampling, amniocentesis, percutaneous umbilical blood sampling. Chorionic villus sampling tends to determine the material from placenta. On the other hand, amniocentesis tends to determine the amniotic fluid level. Amniotic fluid refers to the liquid such as substance from the notable sac that surrounds the infant. Lastly, the percutaneous umbilical blood sampling tends to measure the blood found in the umbilical cord. Such tests are usually aimed at determining any alterations in chromosomes that would show diagnosis of Down syndrome. In other words, these tests are be vital to parents that have possible genetic disorders. In case a mother gave birth to a baby with Down syndrome, then it would be important to undergo a test before embarking on another birth.

Cultural Considerations

Cultural factors should be considered when taking care of a child suffering from Down syndrome. Healthcare educators are required to be careful in imparting vital information. Most importantly, both physical and mental capabilities should be considered for both the patient and the family. It is important to note that living with Down syndrome does not mean that one is an outcast in the community. Furthermore, these people grow into adults and end up getting jobs and living on their own. However, it would be advisable for those people suffering from Down syndrome to be involved in community development and to visit healthcare providers on regular basis in order to determine their progress. Moreover, families that have a child suffering from Down syndrome are encouraged to assist their loved ones in connecting with other relatives or friends having children suffering from Down syndrome. That helps families to grow with an insight of overcoming any potential diversity in taking care of their ailing children. It is also important to note that adults are taught in order to help them solve problems or meet their sudden needs. Therefore, identifying all that a patient of a family believes in should be one of the learning needs. In case teaching tries to address aspects that are out of the family’s culture, then it is unlikely that learning is taking place. In other words, understanding a patient’s and family’s culture is crucial in teaching and learning process.

In conclusion, teaching patients and their families how to deal with a disease is an effective idea. The Bosnian parents have just given birth to a child suffering from Down syndrome; hence, there is a need to educate them on the best ways to take care of their ailing child. It is expected that the parents are undergoing a critical moment, especially after having a baby suffering from an unexpected illness that happens in only 1 out of 679 newborns across the United States. Therefore, educating them and letting them know about the best ways to feed, raise and handle both psychological and social effects would be the best way to help them. This plan has provided the Bosnian parents with full information about their child’s illness that is most likely to be a life-long illness, so they need to handle it in an effective way.

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About the Author

Luna Griffin is a specialist in English literature at the Orlando University and longtime work as a writer at https://writer-elite.com – essay writing services that provide all students with any types of written assignments in all disciplines. She always wanted to become a writer and publish a book that will become a new contribution to the literature. She started career as an English Tutor after which she started to show interest in child psychology research. She is currently working on a variety of topics related to studying the state of modern education.

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