Materiały źródłowe

• #1 Nursing Care Plan For Down Syndrome – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-down-syndrome/

  The nursing care plan for individuals with Down syndrome is a holistic and person-centered approach aimed at addressing the unique needs and challenges associated with this genetic condition. […] This nursing care plan for Down syndrome recognizes the importance of providing comprehensive and individualized care to support individuals with this condition across their lifespan. […] Nurses play a crucial role in collaborating with the healthcare team, families, and other support networks to optimize the overall well-being and quality of life of individuals with Down syndrome. […] The care plan encompasses various aspects, including early intervention, developmental support, educational assistance, and promoting independence. […] Education and support are vital components of the nursing care plan, as nurses provide families with valuable information about Down syndrome, available resources, and strategies for promoting optimal development and overall well-being.

• #1 Down Syndrome (Trisomy 21) Nursing Care Planning and Management

  https://nurseslabs.com/down-syndrome-trisomy-21/

  Down syndrome nursing management includes several key components. […] Nursing assessment for a child with Down syndrome includes a thorough, systemic, head-to-toe assessment of the newborn and obtaining a history of the mother’s pregnancy, birth history, and genetic testing. […] Major nursing diagnoses for a child with Down syndrome are delayed growth and development related to impaired ability to achieve developmental tasks, self-care deficit related to cognitive impairment, impaired verbal communication related to impaired receptive or expressive skills, and risk for infection related to decreased muscle tone and poor drainage of mucus. […] The major goals for a child with Down syndrome include the ability to perform motor, social, and/or expressive skills typical of their age group, perform self-care and self-control activities appropriate for age, establish a method of communication for expressing needs, and achieve timely wound healing.

• #2 Down syndrome – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

  Down syndrome is a genetic condition caused when an unusual cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome. […] Better understanding of Down syndrome and early interventions can greatly improve the quality of life for children and adults with this condition and help them live fulfilling lives. […] Occupational therapy, physical therapy, and speech and language therapy can help improve physical functioning and speech. […] Early intervention and special education services can help children and teens with Down syndrome reach their full potential. Services for adults with Down syndrome can help support living a full life. […] Health concerns that result from having Down syndrome can be mild, moderate or severe. Some children with Down syndrome are healthy, while others may have serious health problems. Some health concerns may become more of a problem as the person gets older.

• #2 Nursing Care Plan For Down Syndrome – Made For Medical

  https://www.madeformedical.com/nursing-care-plan-for-down-syndrome/

  Through a comprehensive nursing assessment for Down syndrome, healthcare providers can gain valuable insights into the child’s overall health, developmental status, and specific needs. […] By addressing the unique healthcare needs of individuals with Down syndrome, nurses play a vital role in optimizing their development, well-being, and overall quality of life. […] By implementing these nursing interventions, healthcare providers can support individuals with Down syndrome in reaching their full potential and improving their overall quality of life. […] The nursing care plan also encompasses family support and counseling, recognizing the challenges and stress associated with caring for a child with Down syndrome. […] By providing emotional support, resources, and connecting families with support groups, nurses create a supportive network that enhances the overall well-being of both the child and their family. […] In conclusion, the nursing care plan for Down syndrome exemplifies the dedication of nurses in providing patient-centered and holistic care.

• #3 Down Syndrome – Care of the Patient Course | CNA Ceu | CEUfast

  https://ceufast.com/course/caring-for-down-syndrome-patients

  Patients with Down Syndrome may need help with daily activities. […] Help with activities like bathing, brushing teeth, and dressing if they need it. […] Help patients take their medications as prescribed and ensure they attend regular medical appointments. […] When working with a person with Down syndrome, observations should include noticing if the patient is irritable, unresponsive to contact, abnormal eye contact during feeding, gross motor problems, decreased alertness to voice cues, or difficulties with activities of daily living. If any of these areas show change, the nurse should be alerted. […] People with Down Syndrome need emotional and social support to thrive. […] Several barriers can make caring for a patient with Down Syndrome challenging. […] There are laws that protect the rights of individuals with Down Syndrome.

• #4 Down Syndrome Diagnosis: A Comprehensive Guide – Special StrongAccessibility ToolsIncrease TextDecrease TextGrayscaleHigh ContrastNegative ContrastLight BackgroundLinks UnderlineReadable FontReset

  https://www.specialstrong.com/down-syndrome-diagnosis-a-comprehensive-guide/

  Down syndrome, also known as trisomy 21, is a genetic disorder that affects approximately 1 in 700 babies born in the United States. […] When focusing on the comprehensive care of individuals with Down syndrome, nursing professionals play a pivotal role in identifying and addressing the specific health needs associated with this condition. The term “down syndrome nursing diagnosis” underscores the importance of a multifaceted approach to care that includes, but is not limited to, the following assessments: […] 1. Impaired Physical Mobility: This nursing diagnosis primarily addresses the low muscle tone (hypotonia) that is characteristic of Down syndrome. Hypotonia can affect an individual’s ability to perform daily activities and achieve certain developmental milestones on time. Interventions may include physical therapy to enhance mobility, exercises tailored to improve muscle strength, and adaptive equipment to support daily functioning.

• #5 Down Syndrome Diagnosis: A Comprehensive Guide – Special StrongAccessibility ToolsIncrease TextDecrease TextGrayscaleHigh ContrastNegative ContrastLight BackgroundLinks UnderlineReadable FontReset

  https://www.specialstrong.com/down-syndrome-diagnosis-a-comprehensive-guide/

  2. Risk of Infection: Given that individuals with Down syndrome might have a compromised immune system, they are at an increased risk for various infections. This diagnosis requires vigilant monitoring for signs of infection and prompt intervention. Preventative measures, such as vaccinations and educating caregivers on the signs of infection, are crucial components of care. […] 3. Delayed Growth and Development: Intellectual disability associated with Down syndrome can impact both cognitive and physical development. This diagnosis supports the implementation of individualized developmental interventions, including speech therapy, occupational therapy, and specialized educational programs designed to enhance cognitive abilities and support optimal development. […] An early Down syndrome nursing diagnosis is essential for several reasons. Early intervention can significantly improve developmental outcomes. It allows healthcare providers to implement appropriate educational and therapeutic strategies. Families benefit from support and education regarding available resources. Early diagnosis helps to identify any associated medical conditions. By addressing health issues early, healthcare costs may be reduced over time. Individuals have an opportunity to achieve their full potential with timely support. Nursing professionals play a crucial role in guiding families through early interventions. Early detection is key to improving quality of life and functional abilities.

• #6 Down Syndrome (Trisomy 21) Nursing Care Planning and Management

  https://nurseslabs.com/down-syndrome-trisomy-21/

  Nursing interventions for a child with Down syndrome involve providing adequate nutrition, encouraging regular hearing and vision checks, educating parents about Down syndrome and care, and providing emotional support and motivation to the family caregiver. […] Goals are met as evidenced by the child’s ability to perform age-appropriate skills, self-care activities, establish communication, and achieve timely wound healing.

• #7 Down Syndrome: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/down-syndrome/?srsltid=AfmBOoqDwxlSC4U8pAF-Zdh2pdzyuzibi2ZWeVNl5ueVrQGtw0MYa7aQ

  Use the nursing process to develop a plan of care for individuals. The nursing assessment (with common findings listed), diagnosis, interventions, expected outcomes, and education for individuals with Down syndrome are listed below. […] Services and therapy to help individuals with Down syndrome include: Occupational, Physical, Speech. […] Administer medications, as ordered. […] Encourage individual to perform activities of daily living as independently as possible. […] Explain diagnosis and expectations. […] Initiate safety and infection precautions. […] Maintain calm environment. […] Monitor the following: Adverse reactions or complications, Treatment response, Vital signs. […] Teach coping techniques. […] Minimize growth and developmental delays. […] Minimize self-care deficits.

• #8 Nursing Interventions Down Syndrome: – Pediatrics

  https://www.naxlex.com/nursing/study-guides/nursing-interventions-down-syndrome-1699262812

  Provide supportive care: Create a safe and nurturing environment for the individual, considering their specific needs and abilities. […] Educate caregivers on appropriate handling techniques, including proper positioning and feeding methods. […] Encourage regular physical activity and exercise to promote muscle tone and overall well-being. […] Promote cognitive development: Utilize age-appropriate educational materials and techniques to support learning. […] Use visual aids and assistive devices, if necessary, to enhance communication and understanding. […] Collaborate with educators and therapists to develop individualized educational plans and interventions. […] Monitor and manage health conditions: Regularly assess vital signs, including heart rate, blood pressure, and oxygen saturation levels.

• #9 Down Syndrome Treatment & Management: Approach Considerations, Surgical Care, Diet and Activity

  https://emedicine.medscape.com/article/943216-treatment

  No special diet is required, unless celiac disease is present. A balanced diet and regular exercise are needed to maintain appropriate weight. […] No restriction of activities is necessary. […] Consultations with the following may be indicated: Clinical geneticist, Developmental pediatrician, Cardiologist, Pediatric pulmonologist, Ophthalmologist, Dentist, Neurologist/neurosurgeon, Orthopedic specialist, Child psychiatrist, Physical and occupational therapist, Speech-language pathologist, Audiologist. […] The standard immunizations and well-child care should be provided. In addition, specific manifestations of the syndrome and associated conditions must be addressed. […] Early intervention programs are promising. Programs for infants aged 0-3 years are designed to monitor and enrich their development by focusing on feeding as well as on gross and fine motor, language, personal, and social development.

• #10 Down Syndrome: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/down-syndrome/?srsltid=AfmBOoqDwxlSC4U8pAF-Zdh2pdzyuzibi2ZWeVNl5ueVrQGtw0MYa7aQ

  Remain free of infection and injury. […] Perform annual audiological and ophthalmological evaluations. […] Implement early intervention programs. […] Know diagnosis and treatment plan. […] Understand medications and potential side effects. […] Individuals with chronic respiratory and cardiac disease should have the influenza and pneumococcal vaccinations annually. […] Provide pharmacological agents, behavior therapies, and/or psychotherapy for psychiatric disorders. […] Prevent tooth decay and periodontal disease through good dietary habits, proper dental hygiene, fluoride treatments, and restorative care. […] Prompt treatment of otitis media and respiratory tract infections is necessary. […] Set realistic goals. […] Social interaction is encouraged. […] Individuals with cardiac disease need subacute bacterial endocarditis prophylaxis when having dental work or other invasive procedures.

• #11 Down Syndrome: Nursing Diagnosis & Interventions | Nurse.com

  https://www.nurse.com/clinical-guides/down-syndrome/?srsltid=AfmBOoqDwxlSC4U8pAF-Zdh2pdzyuzibi2ZWeVNl5ueVrQGtw0MYa7aQ

  Have annual thyroid function and diabetes testing. […] Treat skin disorders with proper hygiene, frequent bathing, weight reduction, antibiotic ointment, or systemic antibiotic therapy. […] Upon discharge, contact: Early intervention services, National and local Down syndrome organizations, Social services. […] Follow up with provider or surgeon, as directed. […] Maintain daily exercise if there is no underlying cardiac illness. […] Normal, well-balanced nutrition should be consumed, as tolerated.

• #12 Health Care Management of Adults with Down Syndrome | AAFP

  https://www.aafp.org/pubs/afp/issues/2001/0915/p1031.html

  Patient information: See related handout on health issues in adults with Down syndrome, written by the author of this article. […] The family physician’s holistic approach to patients forms the basis of good health care for adults with Down syndrome. Patients with Down syndrome are likely to have a variety of illnesses, including thyroid disease, diabetes, depression, obsessive-compulsive disorder, hearing loss, atlantoaxial subluxation and Alzheimer’s disease. […] In addition to routine health screening, patients with Down syndrome should be screened for sleep apnea, hypothyroidism, signs and symptoms of spinal cord compression and dementia. […] Plans for long-term living arrangements, estate planning and custody arrangements should be discussed with the parents or guardians. […] Because of improvements in health care and better education, and because more people with this condition are being raised at home, most adults with Down syndrome can expect to function well enough to live in a group home and hold a meaningful job.

• #13 What are common treatments for Down syndrome? | NICHD – Eunice Kennedy Shriver National Institute of Child Health and Human Development

  http://www.nichd.nih.gov/health/topics/down/conditioninfo/treatments

  Early intervention refers to a range of specialized programs and resources that professionals provide to very young children with Down syndrome and their families. These professionals may include special educators, speech therapists, occupational therapists, physical therapists, and social workers. […] Research indicates that early intervention improves outcomes for children with Down syndrome. This assistance can begin shortly after birth and often continues until a child reaches age 3. After that age, most children receive interventions and treatment through their local school district. […] Most children with Down syndrome are eligible for free, appropriate public education under federal law. […] A variety of therapies can be used in early intervention programs and throughout a person’s life to promote the greatest possible development, independence, and productivity.

• #14 What are common treatments for Down syndrome? | NICHD – Eunice Kennedy Shriver National Institute of Child Health and Human Development

  http://www.nichd.nih.gov/health/topics/down/conditioninfo/treatments

  Physical therapy includes activities and exercises that help build motor skills, increase muscle strength, and improve posture and balance. […] Speech-language therapy can help children with Down syndrome improve their communication skills and use language more effectively. […] Occupational therapy helps find ways to adjust everyday tasks and conditions to match a person’s needs and abilities. […] Emotional and behavioral therapies work to find useful responses to both desirable and undesirable behaviors. […] More and more often, interventions for children with Down syndrome involve assistive devices—any type of material, equipment, tool, or technology that enhances learning or makes tasks easier to complete.

• #15 Down Syndrome – familydoctor.org

  https://familydoctor.org/condition/down-syndrome/

  There are a variety of therapies that can help a child with Down syndrome. These include: Physical therapy – exercises and activities that increase strength, improve posture and balance, and build motor skills. Many children with Down syndrome have low muscle tone. Physical therapy can be particularly helpful for them. […] Speech therapy – helps them communicate better and improve their language skills. Children with Down syndrome often speak later than other children. This therapy can help them develop those skills. […] Occupational therapy – adjusts everyday activities to the child’s abilities. This therapy teaches skills your child will use every day. These include eating, getting dressed, handwriting, and caring for themselves. […] Behavioral therapy – helps your child cope with his or her condition. Complicated feelings and behaviors often go along with it. Children with Down syndrome get frustrated and can develop compulsive behaviors. They are more likely to have ADHD or other mental health issues. Therapy with a mental health professional can help.

• #16 Down syndrome – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/down-syndrome/diagnosis-treatment/drc-20355983

  You’ll need to make important decisions about your child’s treatment, services and education. Build a team of healthcare professionals, teachers and therapists you trust. […] As your child with Down syndrome becomes an adult, healthcare needs can change. […] In addition to meeting health needs, caring for your adult loved one with Down syndrome includes planning for current and future life needs, such as living arrangements, social and recreational opportunities, support programs and jobs, financial support, and guardianship. […] When you learn your child has Down syndrome, you may experience a range of emotions. You may not know what to expect, and you may not be sure of your ability to care for a child with a disability. Information and support can help ease these concerns. […] People with Down syndrome can live fulfilling lives. Most people with Down syndrome live with their families, in supported living settings or independently.

• #17 Health Care Management of Adults with Down Syndrome | AAFP

  https://www.aafp.org/pubs/afp/issues/2001/0915/p1031.html

  Local parent-support groups may be able to provide names of counselors who have worked well with cognitively delayed adults. […] Physicians and family members should anticipate stresses that may overwhelm the adult with Down syndrome. Planning can ensure a successful transition, such as those from home to apartment or from one job to another. […] The physician should monitor these patients for loss of independence, loss of living skills or function, depression and behavior changes at least annually.

• #18 Down Syndrome Treatment & Management: Approach Considerations, Surgical Care, Diet and Activity

  https://emedicine.medscape.com/article/943216-treatment

  Because of potential atlanto-occipital instability, care should be taken when sedation and airway management are considered for procedures or for consideration of sports participation. […] Regular screening is necessary for institutionalized older adults to diagnose early onset dementia, epilepsy, hypothyroidism, and early loss of visual acuity and hearing. […] Timely surgical treatment of cardiac anomalies, detected during the newborn period or early infancy, may be necessary to prevent serious complications and is crucial for optimal survival. […] Prompt surgical repair is necessary for GI anomalies, most commonly duodenal atresia and Hirschsprung disease. […] Surgical intervention may be necessary to reduce atlantoaxial subluxation and to stabilize the upper segment of the cervical spine if neurologic deficits are clinically significant.

• #19 Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8304112/

  Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. […] Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. […] Common aspects of families care coordination needs included communication and information needs and utilization of healthcare resources. […] Care coordination is critical for the management of care for any child with a chronic condition, but particularly for those with a genetic condition that could span multiple body systems, such as children with Down syndrome (DS).

• #20 Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8304112/

  Caregivers perceptions of the quality of communication were linked to both positive and negative outcomes for families and children in both quantitative and qualitative studies. […] Caregivers reported feeling responsible for accessing reliable health management information. […] Families expressed a desire to have targeted information at times of transition or at specific age milestones. […] Care coordination is a key component in the implementation of medical home policy. […] Caregivers recommendations addressing strategies and resources related to care coordination included communication, information, and utilization. […] Families also need to develop good organization skills to manage care coordination. […] Findings from this scoping review support the conclusion that effective care coordination has the potential to increase family satisfaction and improve outcomes in managing care for a child with DS.

• #21 Health Care Management of Adults with Down Syndrome | AAFP

  https://www.aafp.org/pubs/afp/issues/2001/0915/p1031.html

  Health-related conditions beyond those of the general population that should be screened for in patients with Down syndrome are presented in detail in the Health Care Guidelines for Individuals with Down Syndrome. […] Adults with Down syndrome have the same basic health care needs as typically developed people, including health screening and prevention. […] Diabetes has a higher prevalence in adults with Down syndrome than in the general population. […] An annual testicular examination in men may be prudent because of the higher prevalence of testicular cancer in this group. […] Because the prevalence of abuse in patients with disabilities is higher than in the general population, screening for and counseling about abuse has special importance. […] Family physicians can help patients with Down syndrome develop good communication and social skills that will enhance their ability to live independently, have a job and interact with others.

• #22 Down’s syndrome | Nursing Times

  https://www.nursingtimes.net/archive/downs-syndrome-2-20-02-2009/

  Downs syndrome is a genetic condition that occurs because of an extra chromosome. […] There is no cure for Downs syndrome, but there are a number of treatments that can help to improve quality of life, giving people with the condition the opportunity to lead healthy, active and more independent lives. […] Early intervention programmes are specially designed for children with disabilities and learning difficulties. They focus on providing support to babies and children with Downs syndrome – from when they are born, until they reach five years of age. […] With help and support, many people with Downs syndrome can live an independent and active life. […] Many children with Downs syndrome can go to mainstream schools. […] Many young adults with Downs syndrome go on to pursue further education.

• #23 Nursing Interventions Down Syndrome: – Pediatrics

  https://www.naxlex.com/nursing/study-guides/nursing-interventions-down-syndrome-1699262812

  Implement preventive measures, such as immunizations and regular health screenings. […] Collaborate with healthcare providers to manage any chronic health conditions or complications. […] Provide emotional support: Offer counseling and guidance to individuals and their families, addressing any concerns or emotional challenges. […] Promote self-esteem and independence through positive reinforcement and encouragement. […] Connect families with support groups and resources in the community. […] Collaborating with therapists, addressing health conditions, and advocating for inclusive education are important interventions for individuals with Down syndrome. […] Monitoring and managing associated health conditions are essential in caring for individuals with Down syndrome. […] Educating themselves about resources and available support networks is an essential step for parents of children with Down syndrome. […] Facilitating communication and collaboration among healthcare providers is essential in managing associated health conditions in individuals with Down syndrome.

• #24 Down Syndrome – Care of the Patient Course | CNA Ceu | CEUfast

  https://ceufast.com/course/caring-for-down-syndrome-patients

  Individuals with Down Syndrome are often affectionate, and guiding them in appropriate expressions of affection is important for their social development. Understanding and managing hypersexual behaviors in a way that respects the individuals dignity while ensuring appropriate behavior. […] Be aware of the challenges in care and work to overcome them. Understand the laws that protect the rights of individuals with Down Syndrome.

• #25 Information for Physicians: A Checklist for Caring for Babies with Down Syndrome

  https://www.massgeneral.org/children/down-syndrome/information-for-physicians

  For all new babies with Down syndrome, please consult your Genetics team. […] Many babies with Down syndrome can successfully breastfeed with additional lactation support. […] Prior to discharge, please enroll your patient in the Massachusetts Early Intervention Program.

• #26 Caring for a Baby Who Has Down Syndrome – familydoctor.org

  https://familydoctor.org/caring-for-a-baby-who-has-down-syndrome/

  Caring for a Baby Who Has Down Syndrome […] Down syndrome is a genetic condition. A person who has Down syndrome is born with an extra copy of the 21st chromosome. It can be detected during pregnancy by ultrasound or with genetic testing, or at birth. Down syndrome causes some physical and intellectual disabilities. Most of the time, it’s at a moderate level. If you have a baby with Down syndrome, you’ll need to care for, talk to, play with, and love them like any other infant. It’s important to have high expectations for your baby with Down syndrome. […] […] In many ways, children who have Down syndrome are like other children. They have the same moods and emotions, they like to learn new things, play, and enjoy life. You can help your child develop by providing as many chances as possible for them to do these things. Help your child have positive experiences with new people and places. […]

• #27 Caring for a Baby Who Has Down Syndrome – familydoctor.org

  https://familydoctor.org/caring-for-a-baby-who-has-down-syndrome/

  Every baby born with Down syndrome is different. As your new baby grows, you’ll need to pay special attention to his or her physical and intellectual development. Your baby also may have some health problems that require extra care. Not all babies born with Down syndrome have health problems. Not all babies will have the same health problems. […] […] Physical health: Babies who are born with Down syndrome are more likely to have feeding issues. Learning to breastfeed or suck a bottle may take your baby longer to learn. Breastfeeding is good for all babies, including babies who have Down syndrome. Your doctor, a nurse, a feeding therapist, or another mom who has a baby with Down syndrome can provide tips and special training. […] […] Your baby will reach infant and toddler milestones. However, it will take them a little longer. Early intervention support services such as physical, speech, and occupational therapies can help children who have Down syndrome develop these skills: Motor skills (crawling, walking, feeding, dressing, handwriting), Language skills (talking and vocabulary development), Social skills (turn-taking, sharing, eye contact, manners), Academic skills (early reading, counting). […]

• #28 Early Intervention | National Down Syndrome Society (NDSS)

  https://ndss.org/resources/early-intervention

  The sooner early intervention begins, the better, but its never too late to start. […] Because of specific challenges associated with Down syndrome, babies will likely experience delays in certain areas of development. […] In monitoring the development of a child with Down syndrome, it is more useful to look at the sequence of milestones achieved, rather than the age at which the milestone is reached. […] Appropriate physical therapy may assist a baby with Down syndrome, who may have low muscle tone, in achieving this milestone. […] Another long-term benefit of physical therapy is that it helps prevent compensatory movement patterns that individuals with Down syndrome are prone to developing. […] Speech and language therapy is a critical component of early intervention. […] A speech and language therapist can help with these and other skills, including breastfeeding.

• #29 Down Syndrome Factsheet (for Schools) (for Parents) | Nemours KidsHealth

  https://kidshealth.org/en/parents/down-syndrome-factsheet.html

  Down syndrome, also called trisomy 21, is a chromosomal condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. […] Children with Down syndrome have delays in speech and motor skills, and may need help with self-care, such as dressing and grooming. […] Students with Down syndrome may: […] need to go to school nurse for medications when necessary […] require physical, occupational, and speech therapies […] need extra time and assistance with class work […] require therapeutic staff support in the classroom. […] Be aware of any medical concerns associated with Down syndrome that are specific to your student. […] Students with Down syndrome are often enrolled in mainstream education systems and enjoy participating with peers in all kinds of classroom activities.

• #30

  https://www.nhs.uk/conditions/downs-syndrome/how-to-help-children-and-young-people/

  Children and young people with Down’s syndrome have some level of learning disability. This means they may need help with daily life. […] You can try these things to help with their development. […] Children with Down’s syndrome should have regular check-ups with a children’s doctor (paediatrician) or a GP. […] Speak to a GP, health visitor or your local council to find out how your child can get these services. […] Children with Down’s syndrome will get special educational needs support at their school or college. […] You can apply for an education, health and care plan (EHC plan, or EHCP). […] This plan says what education and health needs your child has and what support they should get.

• #31 Managing the care of adults with Down’s syndrome | The BMJ

  https://www.bmj.com/content/349/bmj.g5596

  People with Downs syndrome have experienced a dramatic increase in life expectancy, which is now in their mid-50s. […] The approach to primary care for adults with Downs syndrome is similar to that for the general adult population, with the addition of screening for conditions specific to Downs syndrome. […] Practitioners must be vigilant for conditions that are more common in Downs syndrome than in the general population, such as hypothyroidism, obstructive sleep apnea, and osteoporosis. […] Adults with Downs syndrome have a lower risk of hypertension, coronary artery disease, and solid tumors than the general population. […] People with Downs syndrome have an increased risk of Alzheimers dementia, but not all adults experience this; the onset of dementia is not typically seen before age 40. By age 60, 40-77% of adults will have Alzheimers dementia. […] Respiratory infection is the leading cause of death in adults with Downs syndrome.

• #32 Down syndrome – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977

  Over the years, there have been advances in healthcare for children and adults with Down syndrome. Because of these advances, children born today with Down syndrome are likely to live a longer life than in the past. People with Down syndrome can expect to live more than 60 years, depending on how severe their health problems are.

• #33 Anyone have experience with caregiving for Downs Syndrome and dementia? – AgingCare.com

  https://www.agingcare.com/questions/anyone-have-experience-with-caregiving-for-downs-syndrome-and-dementia-486057.htm

  People diagnosed with DS are more likely to be diagnosed with a dementia. Sobering statistic: 30% of people with DS who are in their 50’s have Alzheimer’s and about 50% of people with DS in their 60’s have Alzheimer’s. […] If there are Adult Day Programs that would be appropriate look into them. It will give your sister a break and it will give you a break. Contact the Alzheimer’s Association 1-800-272-3900. Contact the National Down Syndrome Society 1-800-221-4602. See if there are programs in your area that will help.

• #34 FF #243 Palliative Care for Patients with Down Syndrome | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/palliative-care-for-patients-with-down-syndrome/

  Psychosocial domains include communication, self-care, grief, and family circumstances. In addition, there are unique issues that may complicate end-of-life decision making. […] Patients with DS and their loved ones and caregivers have experienced a lifelong disease trajectory, which includes mental retardation, medical, and psychosocial issues. The lifelong toll on families is high. Part of a robust plan of care includes acknowledgment of this toll by healthcare providers. […] Whenever possible, decision makers for people with DS should be encouraged to use substituted judgment to make key palliative care decisions. All efforts should be made to determine the preferences of the patient, however because of lifelong cognitive impairment, the views of the person with DS may not be known.

• #35 FF #243 Palliative Care for Patients with Down Syndrome | Palliative Care Network of Wisconsin

  https://www.mypcnow.org/fast-fact/palliative-care-for-patients-with-down-syndrome/

  The signs of aging and dementia that occur in the general population occur in patients with DS at a much younger age and with a different pattern. […] Prognostication in people with DS is different than for the general population. Although no guidelines exist, the end of life may be recognized late in Down Syndrome and accompanied by a precipitous decline. […] Because patients with DS often have a longstanding lack of competence, proxies/guardians will typically not be able to utilize substituted judgment in making key decisions. Intensive education regarding how medical interventions will affect quality of life is a key part of any plan of care.

• #36 Medical Care for Adults with Down Syndrome | Effective Health Care (EHC) Program

  https://effectivehealthcare.ahrq.gov/products/care-adults-down-syndrome/protocol

  Due to advances in health care and social policy changes based on the rights of persons with disabilities, the life expectancy of people with Down syndrome has dramatically increased. Life expectancy for people with Down syndrome has increased from 10 years of age in the 1960s to around 60 years today. However, significant disparities in access to care, quality of care, and mortality rates exist between individuals with Down syndrome and those without, as well as among individuals with Down syndrome by geography, socioeconomic status, and race. […] Adults with Down syndrome have distinct medical and psychological care needs, which can make the provision of preventive and specialty care services challenging. Most adults with Down syndrome receive suboptimal preventive health care. Also, 20 percent of adults with Down syndrome continue to receive primary care from pediatric clinicians who may lack training or experience in managing adult diseases generally as well as those associated with Down syndrome.

• #37 Caregivers’ experience of having a child with Down syndrome: a meta-synthesis | BMC Nursing | Full Text

  https://bmcnurs.biomedcentral.com/articles/10.1186/s12912-024-02652-y

  Therefore, it is necessary to focus on the experiences of caregivers of children with DS, understand their stress and needs, and provide targeted assistance. […] Our meta-synthesis focuses on children with DS (from birth to the age of 18) and delves into the experiences of caregivers for this disease. […] This study aimed to examine the experiences and feelings of caregivers of children with DS in their daily care process. […] These results can help meet caregivers needs and reduce their care burden, and serve as a basis for policymaking and guidance in clinical practice. […] Caregivers experience additional psychological pressure due to concerns about their child’s coughing, aspiration, and the inability to communicate with others after coughing. […] Caregivers often exhibit anxiety and stress when experiencing feeding difficulties.

• #38 Caregivers’ experience of having a child with Down syndrome: a meta-synthesis | BMC Nursing | Full Text

  https://bmcnurs.biomedcentral.com/articles/10.1186/s12912-024-02652-y

  Parents of children with DS can provide emotional support to each other, actively share the task of caring for their children and daily household chores, and overcome difficulties and challenges together, which has a positive effect on marital relationships. […] Raising children with DS requires expensive medication, treatment, and rehabilitation training, which place an economic burden on families. […] Although DS cannot be cured, caregivers hope to improve their child’s symptoms through their own efforts. […] Caregivers express optimistic thoughts and hopes towards their children, have positive experiences in interacting with them, realise the importance of life, and believe that children have the potential to overcome their difficulties. […] The attitudes of society towards children with DS have undergone positive changes, and most caregivers have expressed full support from society.

• #39 Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8304112/

  Care coordination is critical to ensuring adequate management of co-occurring conditions with DS. […] Missing these recommended care considerations could lead to complications from co-occurring conditions, as well as gaps in care. […] Care coordination can also influence caregivers perceptions of how well the care provided meets the needs of their families. […] Given these barriers, mHealth apps may be a way to fill this gap by supporting caregivers and families in managing their care coordination and health information management needs. […] Studies have shown that primary caregivers are open to the idea of using mHealth apps to support management of their child’s chronic condition and recognize that technology may facilitate improved information access and communication. […] These findings will help guide user-centered design of an mHealth app to support families of children with DS.

• #40 Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8304112/

  The results of this scoping review point to reliable and up to date information as one of the most important caregivers needs with regards to care coordination for their child with DS. […] An mHealth app could allow for information to be communicated through pop-up reminders that could be tailored to a child’s age and the family’s specific needs.

• #41 Healthcare Guidelines | National Down Syndrome Society (NDSS)

  https://ndss.org/resources/healthcare-guidelines

  The healthcare guidelines mentioned below help define the standards of quality care for individuals with Down syndrome. They include specific recommendations for screening tests, information about common medical conditions, suggestions for early intervention, diet and exercise and other issues across the lifespan. […] Specialized guidelines help define for parents what is needed, so they can communicate with their primary care physician and say, This is what is recommended. This is what we need to do. […] Defines the medical vulnerabilities and the necessary screenings for the Down syndrome population. […] The American Academy of Pediatrics publishes a guideline for families and physicians to navigate the health needs of children with Down syndrome. The guidelines were recently updated to include prenatal guidance, building upon previous versions that provide age-based care and treatment.

• #42 Healthcare Guidelines | National Down Syndrome Society (NDSS)

  https://ndss.org/resources/healthcare-guidelines

  The current version (Health Supervision for Children Down Syndrome) was published in Pediatrics (Vol. 149, Issue 5, May 2022). […] Topics addressed: TSH and T4-Thyroid Function Test (annual). Auditory testing (every 2 years). Cervical spine x-rays (as needed for sports); check for atlantoaxial dislocation. Ophthalmologic exam, looking especially for keratoconus cataracts (every 2 years). Clinical evaluation of the heart to rule out mitral/aortic valve problems. Echocardiogram-ECHO(as indicated). […] Low calorie, high-fiber diet. Regular exercise. Monitor for obesity. […] The GLOBAL Medical Care Guidelines for Adults with Down Syndrome provide first-of-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. This life-changing resource as published in JAMA covers 9 topic areas deemed critically important for the health and well-being of adults with Down syndrome and outlines critical future research needs. Adults with Down syndrome and their caregivers should review the GLOBAL Guidelines with their clinicians to ensure they are receiving care meeting best-practice standards for adults with Down syndrome!

• #43 GLOBAL Medical Care Guidelines for Adults with Down Syndrome | Global Down Syndrome Foundation

  https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

  The new GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline) provide first in-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome and was supported by generous donations from the Down syndrome community. […] The GLOBAL Adult Guideline provides an important tool in a primary care setting, augmenting both evaluation and care previously based solely on a persons age, gender, clinical symptoms, or the presence of known risk factors and other comorbidities. […] The checklist is intended to support the health of adults with Down syndrome directly or through their caregivers. We encourage this checklist to be shared with your medical professionals. […] A toolkit to support families and self advocates adhere to the behavior recommendations as established in the GLOBAL Adult Guideline and understand the parts of a psychosocial evaluation.

• #44 Down Syndrome: Symptoms & Causes

  https://my.clevelandclinic.org/health/diseases/17818-down-syndrome

  Children born with Down syndrome lead happy and healthy lives with supportive care. […] Treatment focuses on helping your child thrive physically and mentally. Treatment options could include: […] If your child has Down syndrome, theyll likely see a variety of specialists to make sure theyre healthy. […] People with Down syndrome may have other medical conditions that are either present at birth or develop over time. […] There are resources available to people with Down syndrome and their families. Many families join Down syndrome support groups to share their experiences and ways to help their children live a healthy, full life. […] You can find support through your childs medical care team or by joining groups for families and caregivers to learn more about the condition and how to help your child grow.

• #45 Down Syndrome Medical Care Centers in the U.S. | Global Down Syndrome Foundation

  https://www.globaldownsyndrome.org/research-medical-care/medical-care-providers/

  At the Global Down Syndrome Foundation (GLOBAL) we are working to save lives and dramatically improve health outcomes for people with Down syndrome through Medical Care, Research, Education and Advocacy. […] We recommend parents or caregivers of children with Down syndrome follow the American Academy of Pediatrics Health Supervision for Children and Adolescents with Down Syndrome. For adults with Down syndrome, we recommend the adult and/or their caregiver follow the GLOBAL Medical Care Guidelines for Adults with Down Syndrome. […] In addition to following these healthcare guidelines, it is often useful for those with Down syndrome to visit with medical professionals who have significant experience treating patients with Down syndrome. […] To be clear, only centers specifically specializing in treating people with Down syndrome are listed. […] In order to best help parents, caregivers, and individuals with Down syndrome, we have also created a checklist of useful information and we recently re-contacted each center to verify all the information on the checklist.

• #46 Down Syndrome Care | UC San Diego Health

  https://health.ucsd.edu/care/neurological/down-syndrome/

  Adults with Down syndrome sometimes experience changes in cognition or behavior. […] People with Down syndrome typically also have mild to moderate cognitive impairment. […] We partner with national and local advocacy organizations and community agencies to provide medical care for adults with Down syndrome who are experiencing cognitive changes due to health issues or aging. […] The UC San Diego Down Syndrome Center for Research and Treatment is one of the first programs in the country to connect academic research with the treatment of Down syndrome for adults with cognitive issues. […] The ultimate goal of our research is to cultivate treatments that enhance the lives of people with Down syndrome, making it possible for them to achieve more independence.

• #47 Down Syndrome Diagnosis: A Comprehensive Guide – Special StrongAccessibility ToolsIncrease TextDecrease TextGrayscaleHigh ContrastNegative ContrastLight BackgroundLinks UnderlineReadable FontReset

  https://www.specialstrong.com/down-syndrome-diagnosis-a-comprehensive-guide/

  Healthcare professionals play a vital role in the comprehensive care of individuals with Down syndrome. Nurses, doctors, and therapists collaborate to address medical and developmental needs. The nursing diagnosis for Down syndrome helps tailor interventions to individual needs. Regular check-ups monitor growth, development, and medical conditions. Education and support for families are provided throughout the lifespan. Specialist referrals are made for therapies, such as speech, occupational, and physical therapy. Healthcare professionals facilitate transitions at different life stages, such as starting school. They also help foster independence and community integration while respecting individual preferences. […] A nursing diagnosis for Down syndrome focuses on identifying and addressing specific healthcare needs. Nurses aim to enhance the quality of life for individuals with Down syndrome. Common nursing diagnoses include developmental delays, risk for infection, and impaired social interaction. Nurses also focus on promoting self-care, emotional support, and educational needs. Individualized care plans are developed to meet each person’s unique needs. Health professionals work closely with families to optimize care and support. Early diagnosis and interventions are critical to achieving the best outcomes. Collaboration between nurses, doctors, and therapists ensures comprehensive care.

• #48

  https://www.nads.org/programs/nursing/

  As a nurse and the mother of a son with Down syndrome, I cannot reinforce enough how important your role is to new parents of children who have just been given the diagnosis of Down syndrome. Your interaction is critical in preparing these new parents to take their child home. […] The NADS nurses website is a great resource available to help support your new mom and dad. […] My own experience when my son was born was not pleasant. […] Although I was not involved with NADS prenatally, their early support after my sons birth was critical and helped me realize that with accurate information about Down syndrome, I was able to not only understand Down syndrome, but was able to tend to his immediate needs and help him thrive from the beginning. […] Nurses are on the front line. Nurses are the ones that make the patients feel better by educating them with real, up to date and accurate information.

• #49 Primary Care of Infants and Young Children with Down Syndrome | AAFP

  https://www.aafp.org/pubs/afp/issues/1999/0115/p381.html

  See related patient information handouts on finding out your child has Down syndrome and caring for a child with Down syndrome, written by the author of this article. […] Routine health maintenance is important because infants and children with Down syndrome are more likely to have otitis media, thyroid disease, congenital cataracts, leukemoid reactions, dental problems and feeding difficulties. […] The psychosocial aspects of care should be discussed with the parents of an infant with Down syndrome. […] With newer surgical techniques, early therapy to minimize developmental delay and proper health supervision, the functional prognosis for infants with Down syndrome is considerably improved. […] The care of the infant or young child with Down syndrome can be complicated and may involve a myriad of immediate and long-term medical problems and psychosocial issues.

Zobacz więcej