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What is muscular dystrophy?

What is muscular dystrophy?


Exam 2 Lecture Notes 

What is muscular dystrophy?

Thursday September 15, 2016

Benefits of Music

∙ Supports positive interactions and parenting behaviors

∙ Infant-directed speech (talking in high pitched voice etc) ∙ Relax, soothe distress, invite sleep

∙ Allow children to express themselves  

Tuesday, September 20- Muscular Dystrophy  

What is Muscular Dystrophy

∙ Group of inherited diseases

∙ Caused by mutations impeding the production of proteins that provide  healthy muscle formation  

∙ Results in the weakness and loss of muscle mass in muscles used for  movement, although some forms can affect the heart  

∙ “Some forms of MD are seen in infancy or childhood, while others may  not appear until middle age or later”

How staff can support the youth emotionally and developmentally?

∙ Mainly affects young boys

Types of MD

∙ Types are categorized

∙ Nine different types in all  

∙ Most common  

o Myotonic (MMD or Steinhert’s disease)

o Duchenne

o Cogenital  

∙ Different types have different symptoms but some of them may  include:

o Delayed development of muscle motor skills

o Difficulty using one or more muscle groups

o Drooling

o Eyelid drooping

o Frequent falls

o Loss of strength in a muscle or group of muscles as an adult  o Loss in muscle size

o Problems walking (delayed walking)

What are the therapeutic plans for children?

We also discuss several other topics like What is the breakdown of glucose to pyruvate called?

o Intellectual disability  

∙ Developmental Implications

o A child may start to stumble, waddle, have difficulty going up  stairs, and toe walk

o A child may start to struggle to get up from a sitting position or  have a hard time pushing things, like a wagon or a tricycle  o Children with Duchenne MD usually begin to have problems  around age 5, as the pelvic muscles begin to weaken. Over time,  their muscles weaken in the shoulders, back, arms and legs. We also discuss several other topics like Do elephants have self-awareness?

Eventually, the respiratory (breathing) muscles and heart muscle also may weaken in the teenage years

o Myotonic MD: the most common adult form. The main symptoms  include muscles weakness, myotonia, and muscle wasting  Cognitive issues:

∙ Ages 1-7: delayed language development, lack of basic vocabulary or  normal vocabulary but problems processing or remembering larger  verbal information; increased risk for learning disabilities such as  dyslexia If you want to learn more check out What are the six attributes of coupled human and natural systems as defined by liu et al?

∙ Ages 7-11: academic difficulties due to learning disabilities or  cognitive deficits; problems with short term memory and attention;  problems with executive skills

∙ Ages 12-18: problems with short-term memory and executive  functioning—interfere with their ability to keep track of and efficiently  complete assignments and projects; learning problems can happen for  the first time

How staff can support the youth emotionally and developmentally ∙ Explain muscular dystrophy to them in terms they can understand ∙ Use a teaching doll and books to explain the effects of MD ∙ Be optimistic and encouraging

∙ Share stories from other kids who have muscular dystrophy/ have them meet other kids with MD  

∙ Physical therapists and occupational therapists can assist them with  exercises and bracing to keep muscles strong and joints flexible  Therapeutic Plans- Children  

∙ Physical activities help slow down the degeneration process and create an environment where emotional distress about the disease may come up to be discussed  If you want to learn more check out Which soil conditions promote nutrient uptake?

∙ Toys: improve balance, coordination, fine motor skills and strength  o Should be appropriate for a child’s cognitive abilities and age  o Building blocks, inflatable exercise balls, activity mats,  

lightweight toys

 Should engage the child’s senses (ex: feathers, touch toys,  water toys, etc)

o Technology: video games for gross and fine motor function   Wii and Kinect  

∙ Activities: water therapy and swimming, adaptive sports o Relaxes muscles and gives a sense of freedom We also discuss several other topics like What is the bourgeoisie according to karl marx?

o Vygotsky’s zone of proximal development  

 Stationary activities: blow bubbles for lung weakness,  If you want to learn more check out What does gunning mean by cinema of attractions?

special equipment  

Therapeutic Plan Adolescents

∙ Because Muscular Dystrophy rarely effects a person’s cognitive  abilities, it is best to look for activities that aren’t too simple for the

adolescent’s intelligence. “The ideal toy should also be appropriate for the child’s cognitive abilities.” When looking for the ideal activity, you  need to look for things that will also help improve their balance,  coordination, fine motor skills and strength. Because muscular  dystrophy can also affect how a child views themselves based on what children their age are still able to do, I have devised a therapeutic plan in order to make them feel as normal as possible

o Activity ideas include: fun and interactive way that will distract  and help the adolescent cope with emotional and physical  impairments  

 TECH TOYS: mostly all adolescents are consumed with  

technology in today’s society so in order to incorporate  

this into their hospital visits, I have decided that toys like  

Kinect and Wii would be a good addition to their stay  

 By using things like Wii and Kinect, the kids would be able  to perform activities that they might not be able to  

participate in a real setting. The Wii and Kinect give  

opportunities to promote gross motor functioning as well  

with games like tennis, baseball and dancing  

VIDEO: BrainPOP animation about Duchenne Muscular Dystrophy

Boys get it more often than girls

Ages between 1 and 4

Gower’s Maneuver  

Progressive  increase over time

Muscles don’t get smaller, muscle cells turn into fat and scar tissue As child with DMD grows up, it gets harder

Eventually need electrical wheelchair

Genetic disease  

No cure for DMD but treatment is helping

PT can help slow it down  

Presentation 2: Cystic Fibrosis

Video: One Republic (I lived)

What is Cystic Fibrosis?

∙ A progressive, genetic disease that causes persistent lung infections  and limits the ability to breather over time

∙ In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs  the airways and traps bacteris leading to infections, extensive lung  damage and eventually, respiratory failure. In the pancreas, the mucus

prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients  


∙ Very salty-tasting skin  

∙ Persistent coughing, at times with phlegm

∙ Frequent lung infections including pneumonia or bronchitis  ∙ Wheezing or shortness of breath  

∙ Poor growth or weight gain in spite of a good appetite  

∙ Frequent greasy, bulky stools or difficulty with bowel movements ∙ Male infertility  

Treatments for CF:  

∙ Airway Clearance Techniques (ACTs)- loosen thick sticky mucus so it  can be cleared through your lungs by coughing

∙ Medications: antibiotics, mucus thinners- hypertonic saline o Doctors may prescribe many medicatiosn to help keep your  lungs clear, prevent or fight infection and for some people, help  correct the underlying cause of the disease. Medications that  people need to fight infections for a long time may require  additional devices, such as PICCs and ports  

∙ Nutrition

∙ Fitness

∙ Lung transplant

Developmental Implications for Cystic Fibrosis Diagnosis

∙ Chronic, progressive and disabling nature

∙ Shortened life expectancy avg: 37 years of age

∙ Lifetime implications

o Infertility, nasal sinusitis, respiratory infections, late onset  puberty  

∙ Cognitive, emotional and behavioral challenges associated with the  morbidity of the illness

∙ “Family diagnosis”

o Patients with CF can still have a high quality of life

o Family support is required in order to manage daily healthcare  ∙ Preschool/Early Childhood

o May have trouble understanding illness, very few may feel they  are being punished in some way

o May exhibit extreme reactions or behaviors to escape medical  treatment and may develop high aversion to future medical  procedures  

o Significant treatment burden can increase behavioral demands  and put stress on the child-parent relationships

o Sleep and diet deficits  

o Behavior modification  educate the parents  

∙ School-Age:

o Encourage the child’s sense of ownership of illness

o Peer relationships are the core catalysts

o “Diagnostic period”

 coping with negative peer reaction or bullying”

∙ Adolescence

o Is normally a time of rapid social growth and increased autonomy but

 CF symptoms typically worsen during this time especially  for females

 Increased coughing and fatigue

 May cause isolation from peers and less independence  (home-bound)

 Remain reliant on family  

∙ Adulthood

o Upon age 20 increased pulmonary function declines especially in  females

o Some females are less adherent to high-fat diet

o More self-conscious about public opinion  

Professor Notes:

Both of these can affect children to be physically active:

What does this mean for a 14-year-old boy? Might not be able to socialize  with people he wants to cause he cant play sports, has to stop to take  medicine etc  impact on self-esteem (adults need to keep this in mind)

Health Insurance:

∙ Epi-Pen cost has increased by 488% since 2009  The Bitter Pill (must  read before Thursday)

9/22/16-The Bitter Pill (article on ELC)

∙ “When we debate health care policy, we seem to jump right to the  issue of who should pay the bills, blowing past what should be the first  question; Why exactly are the bills so high?”

How the Affordable Care Act is working for Georgia:

∙ Reducing the number of uninsured Americans: Nationwide, since the  Affordable Care Act’s coverage expansion began, about 16.4 million  uninsured people have gained health insurance

∙ New coverage options for young adults: Under the healthcare law, if  your plan covers children, you can now add or keep your children on  your health insurance policy until they turn 26 years old  

∙ Scrutinizing unreasonable premium increases: In every State and for  the first time under Federal law, insurance companies are required to  publicly justify their actions if they want to raise rates by 10% or more

∙ Removing lifetime limits on health benefits: The law bands insurance  companies from imposing lifetime dollar limits on health benefits –

freeing cancer patients and individuals suffering from other chronic  diseases from having to worry about ging without treatment because  of their lifetime limits  

∙ Ending discrimination for pre-existing conditions  

∙ Expanding mental health and substance use disorder benefits ∙ Covering preventive services with no deductible or co-pay ∙ Cracking down on fraud and abuse in Medicare  

Insurance Jeopardy Questions  make flashcards for all the health insurance  terms  

∙ allowed amount  

-If you leave your hospital without approval from the doctor to be released,  you will be liable to pay the entire hospital bill  insurance wont cover it so  make sure you get approval from your doctor before you leave the hospital  or you will get a huge bill and have to pay the whole thing  

-Cobra: old job lets you keep your insurance while you are looking for a new  job but it is  

$1,000 a month so not cheap but better than paying for services out of  pocket

Types of Health Insurance  

∙ Indemnity:

o Allows you to direct your own health care and visit almost any  doctor or hospital you like

o The insurance company then pays a set portion of your total  charges

o Aka “fee-for-service” plans

∙ PPO:

o Preferred Provider Organizations  

o Pay less if you use providers in the plan’s network  

o Use doctors, hospital and providers outside of the network  without a referral for an additional cost  

∙ POS:  

o Point Of Service  

o Pay less if you use doctors, hospitals and other health care  providers that belong to the plan’s network  

o Require you to get a referral from your primary care doctor in  order to see a specialist  

∙ HSA:

o Health Spending Account  

o Works in conjunction with high deductible health insurance o HSA dollars can be used to pay the health insurance deductible  and qualified medical expenses, including those not covered by  the health insurance, like dental and vision care

∙ HMO:

o Health Maintenance Organization  

o Limits coverage to care from doctors who work for or contract  with the HMO

o Generally wont cover out-of-network care except in an  


o May require you to live or work in its service area to be eligible  for coverage

o HMOs often provide integrated care and focus on prevention and  wellness  

∙ Medical Care Acr

o Platinum: covers 90% on average of your medical costs; you pay  10%

o Gold: covers 80% on average of your medical costs: you pay 20% o Silver: covers 70% on average of your medical costs: you pay  30%

o Bronze: covers 60% on average of your medical costs: you pay  40%

o Catastrophic: catastrophic policies pay less than 60% of the total  average cost of care. Catastrophic plans must also cover the first three primary care visits and preventative care for free, even if  you have not yet met your deductible  


Presentation: Pre-mature Infants  

What is Prematurity?

∙ Babies born before 37 weeks of gestation (the development time in the womb) are called preterm births with an increase in complications ∙ Babies born before 34 weeks are considered moderate premature,  births in-between 34 and 37 weeks are late preterm, before 32 weeks  are very premature, and those before 28 weeks are extremely ∙ Premature infants typically weigh less than 2.5 kg

∙ Spontaneous activity is reduced, while the extremities are not kept in  the normal flexed position  

∙ Gestational age is estimated by the new Ballard score  based on  neuromuscular and physical maturity

∙ Routine screening for metabolic, central nervous system (CNS) and  ocular complications

∙ Premature infants should be carefully monitored, while the weight,  height and head circumference are important to measure on a growth  chart at appropriate intervals  

Developmental Implications

∙ The lower the birth weight, the higher risk for developmental problems ∙ Language development is often delayed

∙ Most have fairly normal physical and motor development, but tend to  be shorter and lighter than their peers  

o Doctors will check for signs of physical movement and body  control problems

 Heart rate, respiratory rate, blood pressure, temperature o 40% od premature children have mild motor impairments o 10-15% of preterm babies have major motor impairment

∙ Teeth and mouth development often causes issues in speech  ∙ Most likely to have:

o Hearing or visual impairments

o Thinking and learning developmental problems

o Social and emotional problems

How can parents and staff support Premature babies?

∙ Spend as much time in the special-care nursery as the child’s condition permits. Even if the parents cannot hold their child yet, encourage  them to touch their child often. Many intensive care units allow parents to do kangaroo care or skin-to-skin care- once the infants don’t require  major support to their organ systems

∙ Once the doctor says it is ok, encourage the mom to breastfeed their  child. Some premature babies may initially require fluids given through  a feeding tube. Breast milk is the best possible nutrition, and provides  antirbodies and other substances which enhance the babies immune  response and helps them to resist infection

∙ Touch the baby as much as the doctor’s will allow. This will help with  attachment and initial developments  

Milestones with Premature Babies

∙ If your baby is 21 weeks old, but was born 5 weeks early, his adjusted  age is 16 weeks (or 4 months). This means you should refer to the  milestones listed under “at 4 months (16 weeks)” to see what your  child should be doing at this age

∙ It is important to remember that development is not a race. Babies  develop at their own speed and in their own way. Some children do not  reach every milestone at the same time. This is especially true if they  were born early  

Therapy Intervention 1- Keepsake Box

∙ Many families feel helpless when they are with their fragile premature  babies

∙ Keepsake box can be used as a way to connect with the baby ∙ Good way for older siblings to feel involved

∙ Can be used to hold keepsakes from home

∙ Can be used to hold a journal to record milestones

∙ Can be used when baby is taken home to hold items such as hospital  bracelet and footprint  

Therapy Intervention 2: Therapeutic Touch

∙ Premature infants go through numerous stressful procedures during  first months of life

∙ Constantly poked and prodded by needles and moved from hand to  hand and end up missing out on comforting touches  

∙ Therapeutic touch is non-invasive treatment that involved no other  equipment or technology. It can be done by nurses or massage  therapists

∙ There are several different variations of therapeutic touch  Benefits of Therapeutic Touch  

∙ Reduces stress behaviors (grimacing, crying, jerky arm or leg  movements, sneezes, yawns, startles etc)

∙ Pacifying effect

∙ Reduces pain  

∙ Greater weight gain  

∙ More sleep

∙ Earlier discharge from hospital  

∙ All in all…

o Therapeutic touch is a cost-effective and simple yet incredibly  beneficial method to reducing the stress and pain that preterm  infants experience!

The Healthcare Environment  

Designers Impact Healing

∙ Architects, interior designs, industrial designers, furniture and fabric  designers, landscape architects and urban designers

∙ Link between hospital design and patient care and health  o Fewer hospital-acquired infections

o Shorter stays

o Decrease in pediatric pain  

o NICU design- 10 days shorter stay  

Five Elements

∙ Psychosocial issues

o Press Competence Theory  

 Higher compromised = Higher: susceptible to negative  physical environment  

o Important Psychosocial Aspects Impacted by Environment   Control  

∙ Locus on Control: Who is in control? Perception when  

family member is ill?

o Higher control of space = lower negative  

aspects of environment  

∙ Wayfinding

o Landmarks, windows, massings, singage

∙ Room temperature

∙ Lighting from bed

∙ Windows shades from bed

∙ View

∙ Door

∙ Wheelchair

∙ Toilet

∙ Privacy

∙ Noise

∙ Spaces for families  

∙ Child scale  

 Privacy  

 Personal space

 Territoriality

 Comfort and safety  

∙ Alternative Design Philosophies

o Planetree

o Eden Alternative

o Easy Street  

o Anthroposophy  

∙ Design Recommendations for Pediatric Hospitals

o Access

o Child spaces  place for children to play, feel comfortable o Family spaces  somewhere for family to eat, hangout, relax  o Staff spaces

o Recent trends in hospital design  

 Patient training spaces

 Single room NICU

 Trend of NICU and nurseries in hospitals  used to be really  crowded and depressing  had a little more space but still  not as private as you want to be able to spend time with  your newborn child  

∙ Alternative Caregiving Environments

o Rooming in  staying with child, hospital gives the parents a  room  

o Cooperative care

o Personal space: you carry around with you

o Territory: space around you, other people moving your o Invasion: just taking over your space  

o Violation: move something

o Contamination: somebody left something behind in your territory ∙ Home Care  

o Accessibility

o Views outside

o Space

o Access to bathroom and food

o Family sleep space

o Storage  

o Access to outdoors emergency call system  

o Patients communication  

o Bedside controls

o Accommodations for siblings

o Room near entry

o Opportunities for stimulation  having access to toys, give them  materials they can enjoy with from their bed  

o Extension of home  

∙ Dimensions of healing environments  

o Psychoneuroimmunology: interaction between psychological  process and the nervous and immune systems

o Geomancy (Feng Shui)

o Access to nature, pets etc

∙ Light and color  

o Chronobiology

o Colors: some hospitals have lighting in rooms which children can  control and light up the room in whatever color they want  ∙ Art, music and sensory therapies

o Art therapy  

o Music dance therapy

o Sensory therapies  

Individuals with Disabilities Education Act  

∙ Passed in 1975

∙ Prompted because it was found that half of the 8 million disable  children in the US did not receive appropriate education  

∙ Statute: to make sure all children with disabilities receive free public  education geared toward special education and related services  ∙ Services school must provide

o Schools are responsible in providing physical therapy,  

occupational therapy, health and nursing services and speech  therapy  

o Not required to provide medical services  only licensed  physician can provide them  

o Medical exclusion: limitation on school district’s responsibility on  not proivding medical services but only physical therapy,  

occupational therapy, health and nursing services and speech  therapy

 School isn’t responsible for replacing surgical device but is  responsible for taking care of the device while they have it

In-class Assignment (notes from all the posters)

Chapter 1: IDEA- Individuals with Disabilities Education Act ∙ Children have the right to a free appropriate education in the least  restrictive environments

∙ Eligibility

o Diagnosed with one or more disability used in fed statute o Require special education/instruction as a result of a disability  ∙ 504: teachers evaluate students based on average student  performance

o only in the classroom; doesn’t apply outside class environment  o all IDEA students fall under 504; not all 504 students covered  under IDEA

∙ Teachers Cannot

o Diagnose

o Deny accommodations needed for students

o Healthcare procedures must be done in schools by a licenses  healthcare professional  

∙ Teachers shouldn’t be providing any service but some schools have to  do this because they don’t have nurses

∙ 504: mild disability, get extra time on tests or an acquired space to  take your test

∙ schools can’t deny children an appropriate education due to chronic  illness or disability  

Chapter 2:

∙ I.D.E.A (Individuals with Disabilities Education Act): provides public  education for disable children  

o Order of things to become diagnosed, outcomes, identifying the  child, planning what they need to do to help child, plan of action,  evaluate student’s progress  

∙ Responsibilities to Student

o Assessment

o Diagnosis

o Outcomes identification  

o Planning

o Implementation  

o Evaluation  

o Create individualized healthcare plans for students with special  needs

∙ The school nurse should ensure that all non-medical personnel in the  school are aware of children’s’ health care needs

∙ Guidelines for determining appropriate delegation safety, staffing,  schooling, supervision  

∙ Many state’s laws are vague

Chapter 3- Legal Framework  

∙ I.D.E.A: requires all children with disabilities to receive free public  education toward special education and related services  

o Medical exclusion: limitation on school districts’ responsibility on  not providing medical services, only being able to provide  services such as: physical therapy, health and nursing services,  speech therapy etc


∙ Framework for practice of nursing

o RN



∙ Scope of practice

o Unlicensed persons cannot assign tasks to anyone

o Only nurses can delegate with in nursing practice

∙ 5 rights of delegation

o the right task

o the right person

o the right direction  

o the right supervision  

o the right circumstance  

∙ Delegation of Nursing staff in school setting

o Only nurse can delegate tasks

o Rules vary from state to state

∙ Complicated staffing issues

o Kids with private health care provides nurses

∙ Nurses can’t do medical services in a school setting  

Part 2: Liability  

∙ School nurses are lacking resources  may lead to legal concerns  ∙ States require school districts to defend school nurse --? When actions  are taken against school nurse

∙ Nurses can avoid liability by acquainting themselves with the policies  and procedures adopted by their school and acquainting themselves  with their job description

∙ Some causes for liability  

o Failure to function with established policies

o Failure to observe and report changes in a patient’s condition  o Improper physician orders

o Abandonment of patient  

∙ Negligence: no one can sue school nurse without all 4 elements  together:

o Duty to conform to certain standard

o Breach of duty

o Close casual connection  

o Loss or damage  

o School nurses are not sued very often  

∙ Section 1983: federal rights have been violated, allowed to seek  money, any damages or other remedies

o IDEA: school-age kids with disabilities, parents must exhaust  IDEA process before filing a court action  

o DNR: medical personal should not use extraordinary life saving  measures  

 Ex: CPR, respirators and cardiac shock (to revive a dying  patient)

o Less serious conditions, this is allowed outside hospital setting  Chapter 4: Non-nurses school personnel

∙ Teachers

o Create instructional/educational program for kids

o Consult with specialist and school nurse

o Cannot provide nursing services (besides special circumstances) ∙ Secretary

o Supports principal in running the school

o Handling emergencies and communicate with patients

o Documentation and health records  not supposed to and same  with first aid  

∙ Paraprofessional  

o Supports teacher and kid in classroom  

o Provides health services to students

 No nursing practices  

∙ Bus driver

o Safe transportation  

o Transportation services for special needs  

∙ Health Aid

o Assist school nurse in meeting health care needs

o Provide health services  

 Don’t take place of school nurse

 Takes orders from nurse and principal  

o Nutrition Worker

 Provides nutritious meals and nutritional information  

 Special diets  food allergies  

o Custodian  

 Provide clean school environment  

Chapter 5: Creating a safe environment

∙ Working with disable children, take a stand and make sure to find  someone to help your child  not that staff won’t do it but they have to

agitate the staff and make sure their child gets the services they are  entitled to  

∙ Can Do:

o Transfer students with a team  using a walking belt  

o Keep equipment updated  have staff training periodically  o Use barrier between you and person’s blood

o Wash hands before helping kid

o Use antibacterial is don’t have hand soap

o Use all purpose cleaning products

o Use green cleaning

o Get appropriate medical devices

o Dispose of sharps in a puncture proof container

o When skin is exposed, wash all exposed skin

∙ Can’t Do:

o Can’t do transfers alone

o Don’t assist children with walking belt if above 150 pounds o Can’t be dirty before helping kid

o Don’t overload on bleach

o Don’t use disinfectant unless high risk area

o Don’t use phenols

o Don’t squat or bend excessively  

Chapter 6- School Nurses

∙ 750 students to 1 nurse

o most still don’t meet this  

∙ Teachers are not nurses!

o Cant give meds

∙ Nurses can give

o Initial hearing/vision tests

o Scoliosis test

o IEP planning team  

o Lice testing  

∙ Nurses can’t

o Have more than 4 school assignments  

∙ Teachers (non-medical professionals)

o Can’t  

 Premium invasive medical services

 Administer meds

o Can

 Go through training to perform invasive procedures with  approval of district supervisor  

Health Care Issues and Ethics: Sensitivity in Terminology and Culture  Child Life Code of Ethics  

∙ Child life professionals share as goals:

o Maximizing the physical and emotional health as well as the  social, cognitive and developmental abilities of children

o Minimizing the potential stress and trauma that children and  their families may experience  

∙ Recognize that they are ethically responsible to

o Infants, children, youth and families

o Other professionals

o Staff, students, and volunteers who are receiving training and  supervision  

o Themselves, both personally and professionally  

o It is understood that ethical behavior should not result from edict but from a personal commitment on the part of the individual as  a professional. In any situation, the course of action chosen is  expected to be consistent with the ethical principles either stated or implied herein.

∙ Principle 1 -- Individuals shall hold paramount the welfare of the  children and families whom they serve.

∙ Principle 2 -- Individuals shall strive to maintain objectivity, integrity  and competence in fulfilling the mission, vision, values and operating  principles of their profession.

∙ Principle 3 -- Individuals shall have an obligation to serve children and families, regardless of race, gender, religion, sexual orientation,  economic status, values, national origin or disability.

∙ Principle 4 -- Individuals shall respect the privacy of children and  families and shall maintain confidentiality of information concerning  the children and their families with whom they work. Individuals shall  ensure that the transmission of verbal and written communication is  within the standards and requirements of the employer and local  governing regulations. For professionals working in private practice, all  written documentation must be stored in a locked and secure drawer  or cabinet.

∙ Principle 5 -- Individuals shall promote the effectiveness of the child  life profession by continuous efforts to improve professional services  and practices provided in the diverse settings in which they work and  in the community at large.

∙ Principle 6 -- Individuals shall continually seek knowledge and skills  that will update and enhance their understanding of all relevant issues  affecting the children and families they serve.

∙ Principle 7 -- Individuals engaged in study and research shall be  guided by the conventions of scholarly inquiry and shall recognize their responsibility for ethical practice in research.

∙ Principle 8 -- Individuals have an obligation to engage only in those  areas in which they are qualified and not to represent themselves  otherwise, but to make appropriate referrals with due regard for the  professional competencies of other members of the health team or of  the community within which they work.

∙ Principle 9 -- Individuals shall act with respect for the duties,  competencies and needs of their professional colleagues and shall  maintain the utmost integrity in all interactions with the institutions or  organizations that employ them.

∙ Principle 10 -- Individuals shall use integrity to assess and amend any personal relationships or situations that may interfere with their  professional effectiveness, objectivity or otherwise negatively impact  the children and families they serve. A minimum of two years following the conclusion of a professional role shall lapse before any personal  relationship is permitted to develop with children or the members of  families they serve.

∙ Principle 11 -- Individuals shall recognize that financial gain should  never take precedence over the delivery of services.

∙ Principle 12 -- Individuals who are responsible for the supervision and training of others (i.e., staff, students, volunteers) shall assume  responsibility for teaching ethical professional values and providing  optimal learning experiences.

∙ Principle 13 -- Individuals shall refrain from illegal conduct in their  professional practice of child life.

Health Care Issues and Ethics  

o Beneficence is action that is done for the benefit of others. Beneficent  actions can be taken to help prevent or remove harms or to simply  improve the situation of other

o Clinical Applications: Physicians are expected to refrain from  causing harm, but they also have an obligation to help their  patients. Ethicists often distinguish between obligatory and ideal  beneficence. Ideal beneficence comprises extreme acts of  generosity or attempts to benefit others on all possible  

occasions. Physicians are not necessarily expected to live up to  this broad definition of beneficence. However, the goal of  

medicine is to promote the welfare of patients, and physicians  possess skills and knowledge that enable them to assist others.  Due to the nature of the relationship between physicians and  patients, doctors do have an obligation to 1) prevent and remove harms, and 2) weigh and balance possible benefits against  possible risks of an action. Beneficence can also include  

protecting and defending the rights of others, rescuing persons  who are in danger, and helping individuals with disabilities. o Examples of beneficent actions: Resuscitating a drowning victim, providing vaccinations for the general population, encouraging a  patient to quit smoking and start an exercise program, talking to  the community about STD prevention.

o Non-maleficence means to “do no harm.” Physicians must refrain from  providing ineffective treatments or acting with malice toward patients.  This principle, however, offers little useful guidance to physicians since

many beneficial therapies also have serious risks. The pertinent  ethical issue is whether the benefits outweigh the burdens o Clinical Applications: Physicians should not provide ineffective  treatments to patients as these offer risk with no possibility of  benefit and thus have a chance of harming patients. In addition,  physicians must not do anything that would purposely harm  patients without the action being balanced by proportional  benefit. Because many medications, procedures, and  

interventions cause harm in addition to benefit, the principle of  non-maleficence provides little concrete guidance in the care of  patients. Where this principle is most helpful is when it is  balanced against beneficence. In this context non-maleficence  posits that the risks of treatment (harm) must be understood in  light of the potential benefits. Ultimately, the patient must  decide whether the potential benefits outweigh the potential  harms.

o Examples of non-maleficent actions: Stopping a medication that  is shown to be harmful, refusing to provide a treatment that has  not been shown to be effective.

o Balancing Beneficence and Non-maleficence:

o One of the most common ethical dilemmas arises in the  balancing of beneficence and non-maleficence. This balance is  the one between the benefits and risks of treatment and plays a  role in nearly every medical decision such as whether to order a  particular test, medication, procedure, operation or treatment.  By providing informed consent, physicians give patients the  information necessary to understand the scope and nature of the potential risks and benefits in order to make a decision.  

Ultimately it is the patient who assigns weight to the risks and  benefits. Nonetheless, the potential benefits of any intervention  must outweigh the risks in order for the action to be ethical.  

Cultural Factors with Implications for Health Care Settings  o Communication and Time Orientation  

o Avoid idioms, gestures, and language that could be confusing to  children

o Careful choice of interpreter (same sex)

o Silence in conversation

o Eye contact

o Touch

o Pain

 Emotion expression vs. Emotional Control

 Impacts requests for, use of, fears about pain medication o Religion & Spirituality

 Incorporated into care when possible

 Conflicts with Western medicine

∙ E.g., Jehovah’s Witness – blood transfusions

 Recognition of Holy Days & sacred symbols

o Activities of Daily Life & the Body

 Diet – Hindus, no beef

 Dietary restrictions after leaving hospital

 Hair, Scars, Fat

o Family

 Respect desire for visitors, even large numbers

 Consult with the decision-makers, which are often not the  patient

 Gifts

 Demanding family

o Gender Roles and Hierarchies

 Male Female Inequality

 Elders as decision makers

 Respecting modesty and privacy (use of same sex doctors  and nurses)

 Domestic violence

o Staff Relations

 Authority of the doctor

 Role of the nurse

 Religious preferences of staff

o Birth and Postpartum

 Pica

 Stoic or expressive during labor

 Desired labor partner

 Eating or burying placenta

 Appearance of bonding

o End of Life

 Who should know?

 Expression of grief – stoic or expressive

 Catching the spirit, lighting candles, singing songs

High-Context vs Low-Context Cultures

o High-context: primary purpose of communication is to form and  develop relationships; contextual information is needed  

o relational, collectivist, intuitive, and contemplative  

o emphasize interpersonal relationships, developing trust is an  important first step

o collectivist, preferring group harmony and consensus to  individual achievement

o less governed by reason than by intuition or feelings

o Words are not so important as context, which might include the  speaker’s tone of voice, facial expression, gestures, posture.

o High-context communication tends to be more indirect and more  formal. Flowery language, humility, and elaborate apologies are  typical.

o Low-context: primary purpose of communication is the exchange of  information, facts and opinions  

o logical, linear, individualistic, and action-oriented

o value logic, facts, and directness

o Solving a problem means lining up the facts and evaluating one  after another.  

o Decisions are based on fact rather than intuition.  

o Discussions end with actions.  

o Communicators are expected to be straightforward, concise, and  efficient in telling what action is expected.  

o use precise words and intend them to be taken literally

Families with African American Roots  

o May prefer natural holistic methods

o Health care processes not universally understood

o Lack of perception of common major threats to health

o Emergency room for all health needs

o Preventive care not sought

o Compliance with medication regimens

o All responsible adults act in loco parentis

o Religion

o Authoritarian

o Recommendations for Interventionists  

o Capitalize on kinship bonds and focus on strengths

o Informal support networks

o Use formal titles until permission given

o Understand family attitudes and beliefs about health and medical  o Poverty does not = dysfunction

o Don’t stereotype

o High-context culture

o Don’t talk about personal matters

Families with Angle-European Roots

o Individualism and privacy

o Equality

o Informality

o Orientation toward the future

o Importance of time

o Achievement, work, materialism

o Direct and assertive

o Recommendations for interventionists

o Speak directly and honestly

o Eye-contact

o Reliance on verbal messages

o Be punctual

o Within arms length

o Low-Context culture

Families with Asian Roots  

o Collectivism – mutual interdependence

o Strongest family ties between parent and child not spouses o Husband is the family representative

o Spirits

o Genetic disorders caused by mom

o King -> teacher -> father

o “family centered” may be uncomfortable

o “saving face”

o Recommendations for interventionists  

o High-Context Culture

o Silence is valued

o Limit eye-contact

o Direct, structured, practical, specific

o Be patient

o Prepare for reciprocity

o Greet family members in order of age beginning with oldest o Avoid physical contact

o Don’t touch the child’s head

o Gesture with an open hand

Families with Latino Roots  

o Nurturing, permissive, and indulgent

o Don’t push for developmental milestones

o Medical folk beliefs/spirits

o Time unimportant

o Recommendations for interventionists  

o High-context culture

o Allow additional time

o Brief eye contact

o Include extended family

Families with Middle Eastern Roots  

o Patriarch but mother responsible for children

o Disability = shame, denial, and guilt

o Social interaction and connectedness over privacy

o Interdependence

o Close proximity and physical contact

o Recommendations for interventionists  

o Use informal, personalized communication

o Take a friendly approach rather than authority approach o Have direct contact with the mother

o High-context culture

o Be careful saying “no”

o Polite assent

o Include extended family

o Limit eye contact especially with opposite gender

Person-first language

o People with disabilities  

o 1 in 5 people

o unique individuals

Power of Language

o Inappropriate terms perpetuate stereotypes

o Can promote devaluation, objectification

o Can result in unnecessary segregation and social isolation since  services are often physically removed

o Example: Handicapped

o Replace with: Accessible

o Get rid of: suffers with, afflicted with, victim of

o Replace with: has

o Idea of replacing problem with need

o Disability is not a constant state: context matters

*Look at slides posted for the last 2 presentations

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