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
Treatment options for terminally ill children
Hospital
Home care
Hospice
Physical Signs of Approaching Death
-Loss of senses:
-Tactile sensation decreasing
-Sensitivity to light
-Hearing is the last sense to fail
-Confusion, loss of consciousness, slurred speech
-Decreased appetite and thirst
-Change in respiratory pattern:
-Cheyne-Stokes respirations
“Death rattle
-Weak, slow pulse; decreased blood pressure
Grief and Mourning-Anticipatory grief
When death is the expected or a possible outcome of a disorder, the child and family members may experience anticipatory grief. Anticipatory grief may be manifested in varying behaviours and intensities and may include denial, anger, depression, and other psychological and physical symptoms.
Grief and Mourning-Complicated grief
- Complicated grief is a prolonged, intense grief that can impede an individual’s ability to function on a daily basis.
-Complicated grief, which is characterized as persistent distress and a chronic stress response, may last 6 months or longer after the death of a child and has a significant impact on quality of life of the family left behind
Complicated grief reactions (more than a year after the loss) include such symptoms as intense intrusive thoughts, pangs of severe emotion, distressing yearnings, feelings of excessive loneliness and emptiness, unusual sleep disturbance, and maladaptive levels of loss of interest in personal activities
Parental and Sibling Grief
-Intense, complex
-Primary and secondary losses
-Parental resolution
-Mourning
-Children’s understanding and reactions to death depend on their age and developmental level.
-Nurse’s reactions to caring for dying children
Nurses’ Reactions to Caring or Dying Children
-Most stressful aspect of nursing
-Response similar to that of family members
-Self-care measures
-Attend funeral service
