Lecture 2, part 2

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Families Living with Chronic Illness : 

Families Living with Chronic Illness

congenital anomalies : 

congenital anomalies Birth Defects Occur in 2% to 4% of all births

Human Genome : 

Human Genome Complete set of inheritance DNA

Homologous chromosomes : 

Homologous chromosomes 23 pairs = complete set of 46 The 23rd pair are Sex Chromosomes X & Y Female = XX Male = XY Remaining 22 pairs are autosomes Karyotype = a picture of an individual’s chromosomes

Types of Malformations : 

Types of Malformations Major Structural Abnormalities – serious medical, surgical, or quality of life consequences Minor Anomalies – Normal variants, sacral dimple, umbilical hernia Syndrome – a recognized pattern due to a single specific cause, Down Syndrome, Fetal Alcohol Syndrome.

Types of Malformations : 

Types of Malformations Association – A nonrandom pattern of malformations, no known etiology VATER: Vertebral defects, imperforate anus, tracheoesophageal fistula, and radial/renal defects.

Chromosome Disorders : 

Chromosome Disorders Chromosome or cytogenic disorders – deviations in structure or number Structural – involves loss, addition, rearrangement, or exchange of some of the genes of a chromosome. Ring chromosome – a break occurs in the terminal end of both arms forming a circle.

More cytogenic disorders : 

More cytogenic disorders Somy – Deviations in chromosome #, gain or loss of a chromosome. Monosomy – one fewer than the total # of chromosomes. Trisomy – A cell that contains three , rather than two copies of one chromosome. Translocation – A break occurs in one arm of each of any 2 chr.’s (not paired) & the segments below or above the break points change places.

Autosomal DisordersOther than x or y chromosomes : 

Autosomal DisordersOther than x or y chromosomes 22 pairs of autosomes normally Cri-du-chat: deletion of short arm of #5 chromosome. High pitch cry, sounds like cat, small head, FTT, severe MR. Trisomy 13: (Patau Syndrome), Cleft lip & palate, ear malformations, microphthalmia,Polydactyly, eye defects, cardiac defects, mental retardation, early death.

More Autosomal aberrations : 

More Autosomal aberrations Trisomy 18 (Edward Syndrome) Deformed & low set ears, rocker-bottom feet, overlapping index finger over 3rd, hands held in clenched fist, small nails, prominent occiput, cardiac defects, MR, FTT, early death Trisomy 21 (Down Syndrome) Flat occiput, inner epicanthal folds, small ears, nose & mouth with protruding tongue, high arched palate, muscular hypotonia, broad short hands with stubby fingers & transverse palmar crease, cardiac defects, MR, variable life expectancy.

Common sex chromosome abnormalities : 

Common sex chromosome abnormalities Turner Klinefelter

Autosomal Dominant : 

Autosomal Dominant Result of an altered gene 50% chance affected parent will pass to child with each pregnancy Males & Females Unaffected children of an affected parent will have unaffected children. Examples: Marfan Syndrome, Neurofibromatosis.

Autosomal Recessive : 

Autosomal Recessive 2 copies of altered genes are needed to pass on the disease. Males & females Examples: Cystic Fibrosis, Sickle Cell Anemia, PKU, Tay-Sachs Disease Carriers Both parents carry altered gene – each child of each pregnancy has a 25% chance of disease & a 50% chance of carrier status & a 25% of being unaffected.

X-linked : 

X-linked Hemophilia A & Duchenne MD Males = Disease Females = Carriers

Cytogenetic Diagnostic Techniques : 

Cytogenetic Diagnostic Techniques Chromosome analysis by karyotyping FISH: Fluorescence in situ hybridization

Molecular Diagnostic Techniques : 

Molecular Diagnostic Techniques Human Genome Project – Mapping genes CF SSD Huntington Disease Fragile X Syndrome

Prenatal Genetic Testing : 

Prenatal Genetic Testing Triple Marker Screen (Trisomy Profile Screen) Ultrasound Amniocentesis Chorionic Villus Sampling (CVS)

Chronic Conditions : 

Chronic Conditions Disability Functional limitation that prevents or interferes with a person’s ability to perform age-expected activities Handicapped Barrier imposed by society, the environment, or one’s self in response to perceived differences

Dimensions of Chronic Childhood Conditions : 

Dimensions of Chronic Childhood Conditions Nature of onset Trajectory Effects on appearance Effects on daily functioning (continues)

Dimensions of Chronic Childhood Conditions : 

Dimensions of Chronic Childhood Conditions Effects on behavior and ability to relate to others Care required Marginality Uncertainty

Living with Chronic Conditions : 

Living with Chronic Conditions Models of chronic conditions Deficit orientation model Health orientation model Ordinary model

From the Child’s Perspective : 

From the Child’s Perspective Demands and challenges Emotional and cognitive responses (continues)

From the Child’s Perspective : 

From the Child’s Perspective Day-to-day tasks Developmental issues School issues Education of All Handicapped Children Act Mainstreaming Individuals with Disabilities Education Act Americans with Disabilities Act No Child Left Behind Act (continues)

From the Child’s Perspective : 

From the Child’s Perspective Cultural considerations Being chronically ill in a “healthy” society Changing interactional patterns Potential life outcomes

From the Caregiver’s Perspective : 

From the Caregiver’s Perspective Demands and challenges Diagnosis Learning skills required Time management Role adjustment Caregiver burden Respite care (continues)

From the Caregiver’s Perspective : 

From the Caregiver’s Perspective Emotional and cognitive responses Living with a chronic condition Living with a chronic condition in a “healthy” society Changing interactional patterns Potential life outcomes

From the Sibling’s Perspective : 

From the Sibling’s Perspective Demands and challenges Emotional and cognitive responses Living with a chronic condition Living with a chronic condition in a “healthy” society (continues)

From the Sibling’s Perspective : 

From the Sibling’s Perspective Changing interactional patterns Potential life outcomes Worry about death Worry about his or her own future

Nursing Management of Children with Chronic Conditions : 

Nursing Management of Children with Chronic Conditions Demands and challenges Assessment for strengths and assets Teaching (continues)

Nursing Management of Children with Chronic Conditions : 

Nursing Management of Children with Chronic Conditions Emotional and cognitive responses Avoid assuming emotional issues exist. The nurse’s and family’s perceptions may be different. Avoid assuming that there are fewer problems if the condition is less visible. (continues)

Nursing Management of Children with Chronic Conditions : 

Nursing Management of Children with Chronic Conditions Living with a chronic condition Developmental progress School placement Living with a chronic condition in a “healthy” society Facilitate positive self-concept Assessment for reactions of others (continues)

Nursing Management of Children with Chronic Conditions : 

Nursing Management of Children with Chronic Conditions Changing interactional patterns Anticipatory guidance Professional interactions Potential life outcomes Encouragement Grief

Key Terms Re: Children with Special Health Care Needs : 

Key Terms Re: Children with Special Health Care Needs Chronic Illness: A condition that interferes with daily functioning for > 3 mos in a year, causes hospitalization of > 1 month in a year, or (at the time of diagnosis) is likely to do either of these.

Congenital Disability : 

Congenital Disability A disability that has existed since birth but is not necessarily inherited.

Developmental Delay : 

Developmental Delay A maturational lag – an abnormal, slower rate of development in which a child demonstrates a functioning level below that observed in normal children of the same age.

Developmental Disability : 

Developmental Disability Any mental &/or physical disability that is manifested before the age of 22 years & is likely to continue indefinitely.

Disability : 

Disability A long-term reduction in a child’s ability to engage in day to day activities (playing, attending school) because of a chronic condition.

Handicap : 

Handicap A condition or barrier imposed by society, the environment, or one’s own self; not a synonym for disability.

Impairment : 

Impairment A loss or abnormality of structure or function.

Technology Dependent Child : 

Technology Dependent Child A child between the ages of birth and 21 years with a chronic disability that requires the routine use of a medical device to compensate for the loss of a life-sustaining bodily function; daily ongoing care &/or monitoring is required by trained personnel.

Slide 41: 

Developmental Aspects of chronic illness or disability in children.

Loss & Bereavement : 

Loss & Bereavement Caitlin

Feelings of Loss and Separation in Children : 

Feelings of Loss and Separation in Children Relocation Loss of a possession Pet loss Caregiver separation or divorce

Concept of Death : 

Concept of Death Universality Irreversibility Nonfunctionality Causality

Understanding Death: A Developmental Process : 

Understanding Death: A Developmental Process Piaget Sensorimotor Preoperational Concrete operational Formal operational

Talking with Children about Death : 

Talking with Children about Death Allow the child to grieve. Provide quiet time. Communicate how the death incident affects caregivers. Allow child to talk about feelings as developmentally appropriate.

Grief: A Natural and Healthy Process : 

Grief: A Natural and Healthy Process Grief A complex range of feelings, cognitions, and behaviors Bereavement Adaptation to loss Mourning Process one goes through on the way to adaptation

States of the Grieving Process: Kübler-Ross : 

States of the Grieving Process: Kübler-Ross Denial Anger Bargaining Depression Acceptance

Worden’s Tasks of Mourning : 

Worden’s Tasks of Mourning Task I: to accept the reality of the loss Task II: to experience the pain or emotional aspects of the loss Task III: to adjust to an environment in which the deceased is missing Task IV: to relocate the dead person within one’s life and find ways to memorialize the person

Factors Influencing Children’s Reaction to Loss : 

Factors Influencing Children’s Reaction to Loss Developmental level Concept of loss Relationship with the deceased or grieved Circumstances surrounding the loss Caregiver’s ability to communicate and provide emotional support (continues)

Factors Influencing Children’s Reaction to Loss : 

Factors Influencing Children’s Reaction to Loss Emotional reaction to separation Support from peers and others Prior experience with loss Religious and cultural belief systems

Children’s Response to Loss : 

Children’s Response to Loss Preschoolers School-age children Adolescent

Nursing Care of Families of Child with Life-Threatening Illness : 

Nursing Care of Families of Child with Life-Threatening Illness Prediagnostic phase Diagnostic or acute phase Chronic phase Terminal phase Recovery phase

Decisions : 

Decisions Hospice Organ and tissue donation Autopsy

Should siblings attend the funeral? : 

Should siblings attend the funeral? Should nurses???

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