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Nursing Care of People Who Have Developmental Disabilities

Nursing Care of People Who Have Developmental Disabilities. Scharalda G. Jeanfreau, DNS, FNP-BC. Director, Primary Care Family Nurse Practitioner Program. Nursing. To Make Complete Nursing is temporarily the consciousness of the unconscious, the love of life of the suicidal,

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Nursing Care of People Who Have Developmental Disabilities

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  1. Nursing Care of People Who Have Developmental Disabilities Scharalda G. Jeanfreau, DNS, FNP-BC Director, Primary Care Family Nurse Practitioner Program

  2. Nursing To Make Complete Nursing is temporarily the consciousness of the unconscious, the love of life of the suicidal, the leg of the amputee, the eyes of the blind, the locomotion of the newborn, the knowledge and confidence of the new mother and the voice for those too weak to speak. Virginia Henderson

  3. Objectives • Discuss what nurses contribute to the health team. • Develop awareness of issues related to the nursing care of people who have developmental disabilities. • Identify basic principles of tracheostomy and gastroscopy care.

  4. How do nurses think? • Each health profession has their own way of thinking. • The way we think influences what we do and how we do and what we do or our “job.” • Nurses think about caring for the whole person and their responses to their illness of condition – usually within the context of family. Nurses’ job is to care.

  5. Nurses’ Roles • Caregiver • Advocate • Teacher • Counselor • Change Agent • Manager • Researcher

  6. Health Functioning at one’s highest level at any given time

  7. Chronic Condition Health Promotion Wellness Illness

  8. Cerebral Palsy • Group of permanent disorders of movement and posture causing activity limitations • Caused by some type of disturbance in the developing fetal or infant brain • Often accompanied by disturbances of sensation, perception, cognition, communication and behavior as well as epilepsy and secondary musculoskeletal problems

  9. Types • Spastic (Pyramidal) • Nonspastic (Extrapyramidal) • Ataxic • Dyskinetic

  10. Other Considerations • Etiology – • Effects of CP over time • Complications • Co-morbidities

  11. Nursing Care • Breathing – may have tracheostomy • Nutrition – Gastrostomy (PEG, G-Tube, Button) • Positioning and/or activity • Seizures? • Cognition • Long term effects • Caregiver involvement and skill level

  12. Tracheostomy • Vent to tracheostomy • Chronic aspiration – aspiratory pneumonia • Tube type • Secretions • Infection • Positioning • Safety • Permanence??

  13. Nutrition • Oral skills/issues • Sucking skill, tongue thrust, chewing, swallow ability • Also impacts ability to take meds • Chronic aspiration ?? • Excessive coughing, secretions • Aspiratory pneumonia • Malnutrition • Secondary to eating difficulties • Growth delays • Healing, infections, “poor” health

  14. The BIG Decision: To “tube” or not to “tube” • Procedure • Sedation • Local anesthetic! • Tube issues • Tube type • Skin/stoma care ~ secretions, irritation, yeast • Tube replacements • Safety

  15. The Tube

  16. G - Tube • Formulas • Commercial formula vs. table foods • Feeding tolerance and elimination • Mealtime socialization • Technique • Depends on tube type • Positioning; skin care • Volume/rate/amount http://www.medicalhomeportal.org/clinical-practice/technology-reviews/gastrostomy

  17. Seizures • Type • Frequency/pattern • Timing • Medications • Risk:benefit • Administration • Schecule/Consistency • Reality ~ Seizures can occur 24/7

  18. Long-term Effects • Contractures • Scoliosis can kill. • Medication effects • Results of falls • Arthritis and other co-morbids • No longer “A cute little handicapped child” • Behavioral effects. E.g.. Self-stimulation Life has 100% mortality. Can we delay death and improve quality of life?

  19. Batten Disease:Neuronal Ceroid Lipofuscinoses (or NCL CNL 3 (Juvenile)

  20. How do we help the families? • Advocate • Educate • Listen, support, respect • Recognize grief, chronic sorrow and/or PTSD types of responses and impact on their lives • Remember

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