week 11 Flashcards
Intellectual Disability
-Intellectual disability (DI): a general term that encompasses any type of mental difficulty or deficiency
-Includes significant impairment in general intellectual function (reasoning, learning, problem solving), social skills, and adaptive behaviour
-The focus on conceptual, social, and practical skills enables the development of individual treatment plans designed to enhance functioning
-Onset before 18 years of age
-sometimes diagnosis is made at birth
Intellectual Disability- global developmental delay
-Children less than 5 years of age who display significant delay in acquiring early childhood developmental milestones in 2 or more domains of development.
-Gross or fine motor
-Speech/language
-Cognition
-Social/personal
-Activities of daily living
Nursing Care of the Child With Intellectual Disability
-Developmental milestones
-Educating the child and family
-Early intervention
-Teaching the child self-care skills
-Promoting the child’s optimal development
-Encouraging play and exercise
Promoting Inclusive Nursing Care
-Providing means of communication
-Establishing discipline
-Encouraging socialization
-Providing information on sexuality
-Helping families adjust to future care
-Caring for the child during hospitalization
Down Syndrome
-Most common chromosome abnormality
-1 in 750 live births worldwide
-Most common genetic cause of cognitive impairment
Etiology
-Also known as nonfamilial trisomy 21
-Extra chromosome 21 in 95% of cases
Down Syndrome- Diagnostic evaluation
Clinical manifestations
-Square head with upward slant to eyes
-Flat nasal bridge, protruding tongue
-Hypotonia
-Chromosome analysis
-Physical problems
-Congenital heart disease
-Hypothyroidism
-Leukemia
Down Syndrome-Therapeutic management
Available therapies
-Surgery to correct congenital anomalies
-Evaluation of hearing and sight
-Periodic testing of thyroid function
Prognosis
-Nursing care
-Supporting child’s family at time of diagnosis
-Assisting the family in preventing physical challenges
-Assisting in prenatal diagnosis and genetic counselling
Autism spectrum disorders (ASD)
-Neurodevelopmental disorders
-Impairments in social communication, repetitive, restricted patterns of behaviour, and unusual sensory sensitivities or interests
-Clinical manifestations and diagnostic evaluation
-Failure of social interaction and communication development is the one of the hallmarks of ASD
Early Signs of Autism Spectrum Disorder in Young Children
-Emotional disconnection with others
-Sensitivity to external stimuli
-Ostensible lack of empathy with others, with limited range of emotions
-Unresponsiveness to the usual human interactions
-Difficulties in controlling emotions and physical reactions
-Delayed language development
-Tendency to use nonverbal instead of verbal communication
-Diminished ability to decipher the meaning of others’ facial -expression or demeanor
-Tendency to exhibit repetitive behaviours
Autism Spectrum Disorder- prognosis and care
Prognosis
-Can be improved or overcome - depends on severity
Therapeutic management
-Medications
-Non-pharmacological interventions
-Hormonal therapy
Nursing care
-Interprofessional care
-Highly structured and intensive behaviour modification -programs show most promise
-Supporting the family
Trends in Caring for Children with Complex Conditions
Developmental focus
-Focus on developmental level and coping skills vs. chronological age
Family-centered care
-Family-health care provider communication
-Establishing therapeutic relationships
-Shared decision making
-Normalization
The Family of the Child With a Chronic or Complex Condition
-Impact of the child’s chronic illness or complex condition
-Parents
-Parental roles
-Lone-parent families
Siblings
-Promote healthy sibling relationships
-Help siblings cope
-Involve siblings
The Family of the Child With a Chronic or Complex Condition
-Coping with ongoing stress and periodic crises
-Concurrent stresses within the family
-Coping mechanisms
-Parental empowerment
-Assisting family members in managing feelings
-Shock and denial
-Adjustment
-Reintegration and acknowledgement
-Establishing a support system
-Situational crisis
-Establishing a support system
Nursing Care of the Family and Child with a Chronic or Complex Condition
-Establishing realistic future goals
-Cultivate goals based on child’s goals and values.
-Prolonged survival leads to new decisions and problems.
-Independent living
-Reproductive decisions
-Transition to adult care
General Concepts of Home Care
-Home care trends and needs
-Goals for home care include the following:
-Normalize the life of a child with special needs, including those with technologically complex care
-Minimize the disruptive impact of the child’s condition on the family
-Foster the child’s maximum growth and development
Effective home care
-Intermittent skilled nursing visits
-Private-duty nursing
Home Care Assessment
-Health Care Need
-Child at risk— e.g., Parental substance use
-Chronically ill, but medically stable child with multiple care needs
-Education for caregiver to provide skills ( e.g., Trach/ Vent training)
-Skilled procedures— e.g., Regularly scheduled injections or -infusions, dressing changes
-Technology-dependent child (e.g., ventilator or tracheostomy, home total parenteral nutrition, or enteral feedings by pump, peritoneal dialysis)
-Pain symptom management and palliative care
-Regularly scheduled visits to assess patient status, evaluate home environment, teach care provider skills, determine status of growth
Home Care Assessment- intervention
-As-needed home visits during exacerbation of illness to assess physical status and determine appropriate intervention in collaboration with health care team
-Assistance with transportation
Regular visits
-Assessment of patient status
-Assessment of family status
Services That Support Effective Home Care
-Adequate family education and preparation
-Primary care physician willing to oversee medical aspects of home care
-Professional caregivers adequately trained in relevant nursing and communication skills
-Developmental intervention such as physiotherapy and occupational and speech therapy; early intervention
-Appropriately designed and well-maintained equipment
-Supportive therapies (e.g., respiratory therapy)
-Adequate social and psychological support services
-High-quality respite care
-Appropriate home renovation
-Telephone service in the home
-Internet and computer access
-Appropriate transportation
-Appropriate locally available emergency facilities
-Competent case management services
-Safe environment (electricity, refrigeration, cleanliness)
General Concepts of Home Care: Discharge Planning
-Discharge planning
-Pre-discharge assessment
-Multidisciplinary approach
-Involvement of family in discharge plans
-Assess the actual and perceived complexity of any skills required, ability of the family to learn the skill, plus their previous or present experience with such procedure(s)
-Comprehensive written home care instructions
General Concepts of Home Care: Care Coordination
-Care coordination
-Facilitate timely access.
-Ensure continuity of care for the child and family.
-Ensure high-quality care.
-Provide family support.
-Improve health, developmental, educational, psychosocial, and functional outcomes.
-Role of the nurse, training and standards of care
Family- Centered Home Care
-Three central concepts of the model
-Home as familiar: the environment where one is most comfortable
-Home as centre: the location of rewarding everyday experiences
-Home as protector: privacy, safety, identity
-Culturally safe care
-Parent-professional collaboration
-Recognizing that families vary in defining their role
-Assisting families in recognizing their contributions as worthwhile
Family- Centered Home Care
-The nursing process
Family is partner in each step of nursing process
-School attendance
-Safety issues in the home
Priority phone and electrical service provided
Emergency protocols (including CPR)
-Caregiver stress
Perspectives on the Care of Children at the End-of-Life
-Principles of palliative care
-Focusing on symptom control and support
-Palliative care extend to all aspects of a patient’s quality of life; can be initiated early in trajectory of a patient’s disease
-End-of-life care refers to care provided in the last weeks, days, or hours of a person’s life
-Decision making at end of life
-Ethical considerations in end-of-life decision making
-Health care team decision making
-Parental decision making
-The dying child
Nursing Care of the Child andFamily at End of Life
-Fear of pain and suffering
-Pain and symptom management
-Parents’ and siblings’ need for education and support
-Fear of dying alone or parent’s fear of not being present when the child dies
-Fear of actual death
-Home death
-Hospital death
