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FAMILY-CENTERED CARE
Learning Outcomes:
• The student will be able to:
– Identify elements of family-centered care.
– Apply elements to the practice setting.
– Describe how to incorporate core concepts into care.
– Discuss the definition of “family” as well as various types of families.
• Reading Assignment: Required: None. Recommended: Hockenberry, pgs 13-14.
• “Technology should support your practice, not define it…”
Family-Focused Care:
• Health professionals provide care from the position of being an expert.
• As an expert, they direct care, tell the family what to do, and intervene for the child and family.
– Lack of communication is the biggest issue - children end up coming back after discharge!!
Family-Centered Care:
• A mutually beneficial partnership that develops between families and the nurse, and other health professionals.
• Focuses on the needs of all family members, not just the child’s needs.
Why Family-Centered Care?
– History shows that when parents were allowed to stay with hospitalized children, they were quieter, happier, and recovered sooner.
– Research has confirmed that children had decreased anxiety during procedures, needed less pain medication following surgery, and coped better during hospitalization when parents were allowed to stay with their child.
– Gradually, it has become recognized that parental presence during certain medical procedures, and sometimes resuscitation, is also beneficial to children and their families.
Elements of Family-Centered Care:
Family as the Center
• Always remember: They know their child better than anyone
• Families have important knowledge to share about their child, their child’s health condition, and how their child responds to various actions and events.
• Illness or injury affects all members of the family system (including siblings).
• *Respect – Acknowledges the expertise of the family.
• *Strengths – Recognizing & valuing family strengths and needs
Practice Examples:
• Providing comfortable places for the family to stay (promote sibling visitation) (EX: Ronald’s McDonald House)
• Providing hygiene facilities for families who spend long hours at the facility or travel great distances.
• Offering parent’s the opportunity to participate in care and promote development of expertise
• Collaborative care conferences
• *Collaboration
• Seeking a “partnership” role
• Characterized by several features:
– Communication (Verbal/Nonverbal) pay close attention to body language, use simple words with children, open ended question lead to more information (“what”, “how”, “tell me about”), use pictures, interrupt pictures drawn by children
– Active Listening (most errors occur due to miscommunication)
• “Knowledge has never been known to enter the head through an open mouth”
– Negotiation – Implies discussion
Words That We Should Avoid:
• Words like “policies”, “allowed”, and “not permitted” imply that hospital personnel have authority over matters concerning their child.
• All Visitors: Please pick up the wall phone and dial 1 for permission to enter
Words That We Should Use:
• Words like “guidelines”, “working together”, and “welcome”, communicate an openness and appreciation for families.
• Are These The Same? NO
– “Guidelines for Family Members”
– “Guidelines for Visitors”
Practice Examples:
• Assure that parents are integral in the decision-making process
• That parents have 24 hour access to their child
• Family Advisory Councils
• Family Evaluation of Care, including attitudes of the health professionals
Sharing *Information
• Sharing complete and unbiased information to the family.
• *Empowerment – Sharing knowledge & skills to achieve the goal of the family caring for their child.
• They will need access to information that will make it possible for them to fully participate in planning and decision making.
• Give information on the child’s problem, prognosis, and needs.
• Provide information to siblings at a developmentally appropriate level and answer questions honestly.
Practice Examples:
• Eliciting vital information about their child. (ask family for information)
• Providing pertinent information in writing if possible.
Respect for Cultural Diversity
• Understanding cultural and religious beliefs – respect and sensitivity.
• Understanding coping differences.
Practice Examples:
• Providing translators / interpreters
• Written information should be in family’s primary language.
• Learning about a family’s cultural healing practices.
• Explaining terminology.
Broad Array of *Supports
Practice Examples:
• Help families build on their strengths.
• Offering referrals.
Family-to-family Supports
• Parent-to-parent and family support resources.
• Mentors to families entering the healthcare system for a new chronic condition.
Practice Examples:
• One-to-one or group support (parents and / or child). For example:
– Anger Management Groups
– Parent Support Groups
– Sibling Support Groups
– Asthma Camps, Diabetic Camps and other diagnosis based camps
Flexible Systems of Care
• *Choice - Maintain routines established by the family.
• *Flexibility – Remember need for respite.
Practice Examples:
• Flexible scheduling of clinic visits (after 5PM and on Saturdays).
• Alternatives such as “Satellite Clinics” at schools.
• Smooth transitions between service providers.
• Flexible financial support.
Appreciating Families
• Facilitate “Normalization”.
Practice Examples:
• Introducing ourselves.
• Asking parents their names.
• Being sensitive to terminology, i.e., “mentally challenged vs. mentally retarded” or “learning difference vs. learning disability”.
Definitions:
• Family
• Types:
– Nuclear Family (mom, dad, child(ren))
– Blended (step-parents, sibilings)
– Extended (grandparents, aunts, uncles)
– Single-parent
– Binuclear (joint custody: half time with each parent)
– Heterosexual cohabitating (unmarried parents)
– Gay & lesbian
Family Is Defined As:
• “Whatever the client considers is to be”
BEYOND FIRST DO NO HARM:
PRINCIPLES OF ATRAUMATIC CARE
Learning Outcomes:
• The student will be able to:
– Identify child and family stressors.
– Discuss principles of Atraumatic care.
• Reading Assignment: Required: None. Recommended: Hockenberry, pgs 14-15.
Much of what is done to children to cure illness and prolong life is traumatic, painful, upsetting, and frightening.
Atraumatic Care:
• Is the provision of therapeutic care in settings, by personnel, and through the use of interventions that eliminate or minimize the psychologic and physical distress experienced by children and their families in the health care system
Identification of Child and Family Stressors
• Physical Stressors
• Psychological Stressors
• Environmental Stressors
Physical Stressors
• Pain and Discomfort (injections, venipunctures, suction, dsg changes…etc.)
• Immobility (restraints, bed-rest)
• Sleep Deprivation
• Inability to Eat or Drink
• Changes in Elimination Habits
Psychological Stressors
• Separation from Child
• Lack of Privacy
• Inability to Communicate
• Inadequate Knowledge & Understanding of Situation
• Severity of Illness
• Parental Behavior
• Child Behavior
Environmental Stressors
• Unfamiliar Surroundings
• Unfamiliar Sounds
• Unfamiliar People
• Unfamiliar and Unpleasant Smells
• Constant Lights
• Activity Related to Other Patients
• Sense of Urgency or Lack of Urgency/Concern Among Staff
• Unkind Comments
Stressors for Hospital Preschoolers
• Intrusive procedures (blood work, rectal exam, dressing change)
• Separation (time of surgery)
• Postoperative pain
• Other events (waiting in the emergency department, severe fluid restriction)
Stressors for Parents with Children in ED
• Communication with staff (repeated questioning)
• Concern for the child
• Length of stay in the ED
• Separation from the child
• Child’s appearance
Principles of Atraumatic Care:
• Prevent or Minimize Physical Stressors
– Avoid or Reduce Intrusive and Painful Procedures
– Avoid or Reduce Other Kinds of Physical Distress
– Control Pain
EXAMPLES OF INTERVENTIONS!!:
Abdominal Circumference Measurement:
• Leave the tape measure in place beneath the child and measure at the same time that V/S are taken to avoid disturbing them more than necessary.
Intradermal Skin Injections:
• Use topical anesthetics such as EMLA cream or LMx4 (Lidocaine 4%) which will reduce or eliminate pain without altering results.
Bladder Catheterization:
• Use distraction – blowing bubbles, singing, or deep breathing.
• Use lidocaine jelly to anesthetize the area before the insertion of the catheter.
Blood Gas Monitoring:
• Oximetry should be used first.
Lumbar Puncture:
• Apply LMX 30 minutes before or EMLA one hour before procedure between L3 and L5.
N/G Tube Insertion:
• Consider administration of sedation and analgesia.
• Use of topical lidocaine and phenylephrine for the nose
• Use of tetracaine and benzocaine spray for the throat prior to insertion
• Use a smaller-caliber, soft flexible tube
Venipuncture:
• Use EMLA or LMX or Intradermal buffered lidocaine.
Suctioning:
• Use premeasured suctioning technique.
Circumcision (Topical Anesthetic Only):
• Give acetaminophen one hour before.
• Apply a thick layer of EMLA or LMx4 cream.
• Two minutes before, give a sucrose solution 24% to coat the pacifier.
• After procedure, apply petrolatum or A&D ointment.
Circumcision (Dorsal Penile Nerve Block):
• Lidocaine injected in addition to EMLA).
• Use a comfortable padded restraint or parents to hold the infant.
• Radiant warmer if unclothed.
• Music relaxation.
• Swaddle immediately after procedure.
Chest Tube Removal:
• IV analgesics such as Morphine in combination with Versed may be given before hand.
• Or, oral analgesics and sedatives can be used.
Arterial Blood Puncture:
• EMLA (one hour before) or LMx4 (15-30 minutes before)
• Administer buffered lidocaine (a local anesthetic) intradermally immediately over the artery to minimize discomfort during the blood drawing procedure.
Prevent or Minimize Parent/Child Separation
• Promote Family-Centered Care
• Use Core Primary Nursing
• Consider Research Findings on Parents’ and Childrens’ Preferences
To Be or Not to Be Together
Research Findings:
• All children ages 4 to 18 years wanted their parents to accompany them during a bone marrow test
• Over 80% of children ages 5 to 11 years wanted parents at the time of anesthesia induction & over 90% want them to be in the PACU
• 70% of adolescents ages 14 to 19 years preferred their parents to be present during cancer-related procedures
• Family member opinions of presence during procedures in ED: Good idea 91%, bad idea 5%, & did not care 4%; ED staff opinions: Good idea 93%, bad idea 2% & did not care 5%; Family member presence made 5% members of the ED staff nervous
• When parents who stayed with their child during CPR were asked about the experience, 100% stated they would do it again
• Of family members who stayed during CPR, 76% said their adjustment to death was easier & 64% felt their presence was beneficial to the dying person; 71% of staff endorsed policy
• Emergency Nurses Association supports the option of family presence during invasive procedures and/or resuscitation efforts
• When parents were actively involved in “hugging” children for venipunctures, response from parent and phlebotomist was extremely positive
Three Steps:
Tell the parent what is being done
Ask the parent if they would like to be present
If the answer is “Yes”, give the parent a “job” – Ex. Hold the child’s hand, read to the child…etc.
If the answer is “No”, give them reassurance
In Summary:
• Resistance to parental presence has been based on the fear that:
– parents would delay or interfere with the procedure,
– distract or increase the anxiety of the health professionals performing the procedure, and
– increase parental anxiety.
• Studies have shown that in most cases, parents are less anxious and the ability of health professionals to perform procedures is not affected.
Promote a Sense of Control
• Respect and Elicit Family’s Knowledge About Child and Health Condition
• Reduce Fear of Unknown
• Provide Opportunities for Control
(Orient them to the floor, do things in the simplest process available in front of the child, animism, allow children to have familiar objects from home)
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