Communication, Family-Centered Care, Transitional Care, and Health Care Home
Communicating with Acutely Ill Children at Different Ages
Megan R. Winkler
Mariam I. Kayle
Sharron L. Docherty
Background
Communication is a complex process of information exchange within the context of relationships.
Communication promotes information transfer and also provides opportunities to develop relationships and establish rapport between the child/family and health care provider (HCP).
Communication is the most common “procedure” in health care; yet HCPs frequently acquire this skill through trial and error rather than through formal training.
Careful attention to the selection of words, tone of voice, facial expressions, and body language is necessary to ensure effective communication with children and families.
Good communication can foster a trusting therapeutic relationship between the child/family and the HCP.
Poor communication can result in negative consequences including patient/family emotional distress, distancing between patient/family and HCP, and compromised patient outcomes.
Communicating with Acutely Ill Children: An Individualized Approach
Acutely ill children attempt to make sense of their illness using any information available.
HCPs must involve children in discussions about their health and illness, and provide information that children can understand and process.
There is broad consensus across research and practice that it is important to involve children, regardless of age, in discussions about their illness and care plans. The appropriate timing and approach for these discussions is less clear.
The use of chronologic age and/or the child’s stage of development as a marker for timing and content of discussions can be problematic because of the variability in cognitive development within particular ages and stages.
Communication should be based on the cognitive developmental capabilities (to know and understand) and affective needs (to feel known and understood) of the individual child and his/her readiness for such a discussion. This individualized approach also includes assessment of potential vulnerabilities, experiences with the illness, readiness for information, and relationships with parents and/or caregivers.
Conceptual models of communication:
Child transitional communication model:
Based on an ethnographic study involving school-age and adolescent children; emphasizes an individualized approach to communication.
HCPs regard children as either passive bystanders or active participants in the communication process. While younger children may more commonly assume the role of passive bystanders and adolescents assume the role of active participants, a child may oscillate between the two roles depending upon their immediate needs and preferences.
HCPs require flexibility in their interactions with children, individualizing communication approaches based on the needs of the child.
Communication roles model:
Children 4 to 12 years of age reside in the “background” of communication between parent and HCP until they reach adolescence.
During adolescence, children gain independence, responsibility, and autonomy and become more foreground communicators.
Age ranges should not be interpreted as fixed entities, and HCPs should involve children along with parents in discussions about their care, pacing communication to meet the child’s needs.
Developmental concepts of health, illness, and death:
Chronological age and developmental stage may serve as a rough guide for understanding the child’s conceptions of health, illness, and death. However, HCPs are cautioned against relying solely on those stages in their communication with children (Table 2.1).
TABLE 2.1 Broad Guide to Developmental Concepts of Health, Illness, and Death
Age Range
Concepts of Health, Illness, & Death
Application
Early childhood (3-5 yr).
Lack concept of “forever.”
Preparation for procedures/hospitalization few hours ahead.
Experience time as more compacted.
Allow them to touch & examine objects.
See death as temporary.
Provide concrete simple terms, and explain what you are doing during the procedure.
Magical egocentric thinking.
Praise frequently.
Rely on what they see.
Dispel responsibility & guilt.
Interpret words literally.
Address fear; avoid hiding hands behind your back.
Need less information/fewer details.
Parental presence may help decrease anxiety.
Feel they are responsible for what is happening.
Preparation for procedures/hospitalization few hours ahead.
May experience fear of what they do not know.
Middle childhood (6-12 y).
Developing logic and reasoning skills.
Preparation for procedures/hospitalization up to 1 wk ahead.
Awareness of illness and death.
Need to know what will take place and why it is being done.
Early middle childhood: Tend to personify illness and death (e.g., skeleton, monster).
Use positive reinforcement and provide praise.
Later middle childhood: See death as more final but not personal.
Walk them through the procedure and explain what you are doing and why.
Understand death as final.
Allow questions.
Interest in the physical process of death.
Let them know when the procedure is done.
Understand how the body works.
Explain how equipment works.
Heightened perception of body integrity.
Be sensitive to privacy needs.
Concrete thinking.
Parental presence may help decrease anxiety.
Rules and rituals are important.
Need more information.
May experience fear of what they do not know.
Adolescence (12-18 y).
Well-developed reasoning skills and beginning of abstract thinking.
Full involvement in care planning is important.
Physical appearance is very important.
Explain what you are doing and why.
Have likely experienced death of pet or relative.
Discuss unrealized plans for school, relationships.
Appreciate universality of death.
Respect privacy and opinions.
May feel distanced from death.
Ask if they wish parents to be present.
Encourage peer visitation.
Factors that influence the child’s readiness to engage in discussions about their health and illness:
Past experience with illness (e.g., traumatic procedures, illness, or death in family members or friends).
Family cohesion, support, and emotional resources.
Cultural values and ethnicity.
Creative approaches to assess the child’s readiness for discussions about health and illness include using storybooks and analogies.
HCPs and parents working together to communicate with children about their illness optimizes experience.
HCPs should consider parental/caregiver preference while acting in the best interest of the child.
Parents/caregivers often report that young children (<8 years old) are easily frightened, and in cases of an uncertain prognosis, often believe the child should not participate in decision-making discussions.
Parents/caregivers usually believe that adolescents >16 years of age should be involved in decisions related to their illness, and most parents/caregivers prefer that this age group receive information simultaneously with them.
Strategies for effective communication with children:
Explain medical terms and avoid using confusing words such as “put to sleep” to explain anesthesia or “take blood” to explain collecting blood specimens. Use phrases such as “medicine to help you sleep.”
Words are important, but modeling and rehearsing are also helpful. Demonstrate procedures by using equipment and dolls whenever possible.
Preparing children for procedures:
Preparing children for procedures helps separate fantasy from reality, fosters trust, and reduces uncertainty.
Children who are more informed about procedures have better treatment outcomes.
Best timing for preparation has not been empirically studied.
Generally, for younger children, providing preparation as close to the procedure as possible is recommended.
For older children, providing preparation up to a week prior to the procedure will allow the child the opportunity to process information and ask questions.
When feasible, allowing the child to remain in an upright position may be helpful to reduce anxiety.
If family agrees, allow parental/caregiver presence to support and comfort the child.
Do not use parents/caregivers to restrain an uncooperative child; holding for comfort is the best technique.
Preparation strategies (Mullen & Pate, 2006; Pike & Enright, 2012):
Infants: Awaken infant by gently touching them prior to painful procedures.
Toddlers: Use simple terminology to explain the procedure immediately prior to the procedure. Be honest. Whenever possible, allow the toddler to manipulate the equipment to reduce anxiety. Provide reassurance and praise. Use a single person to be the patient’s coach, as “one voice” minimizes confusion and helps the toddler stay focused on the planned coping strategy. When the procedure is over, use phrases such as “all done.”
Preschoolers: Use books, dolls, and medical equipment to simulate and prepare the child for the entire sensory experience, focusing on what the child will directly experience and what is expected of the child. Plan with the child “safe time” where no procedures or interventions take place. Allow security object during procedure. Avoid terminology such as “put to sleep” for anesthesia.
School-age children: Use books, dolls, and medical equipment to simulate and prepare the child for the entire sensory experience, focusing on what the child will directly experience and what is expected of the child. Preparation can be done over several hours, and even several days, for serious procedures. Ask the child to explain the procedure in his or her own words to verify understanding. Provide/discuss coping strategies with the child to prepare the child to handle the procedure emotionally. Allow choices as much as possible. Provide reassurance and praise during the procedure, and inform the child when the procedure is over.
Adolescents: Prepare adolescents as soon as the decision is made for the procedure. Provide facts about the procedure, and encourage the adolescent to ask questions. Promote autonomy and a sense of control by providing the adolescent with choices and asking if he or she wishes parental presence during the procedure.
Special considerations:
Mechanically ventilated children will be very anxious because of limitations in communication. HCPs should explain to the child why the child cannot speak, and be attentive to nonverbal cues. Use of creative techniques, such as picture boards, to facilitate communication is essential. Ask questions that require “yes” or “no” answers, and ensure that the child knows how to use the call light for help. Parental presence at the child’s bedside can help reduce anxiety.
Communication with children who are sedated and pharmacologically paralyzed takes special emphasis. Although children may appear to be unresponsive, they still retain the ability to hear and feel. It is important that HCPs explain to the child why he/she cannot move and reassure the child that he/she will not be left alone. Parental presence at the child’s bedside can help reduce anxiety.
Communicating with Families
Megan R. Winkler
Mariam I. Kayle
Sharron L. Docherty
Parents/caregivers:
Child illness and hospitalization disrupt a family’s routine.
Parental/caregiver roles may shift as only one caregiver/family member may be available to be at hospital while the other(s) remains with children at home or assumes additional home tasks.
Common reactions experienced by parents/caregivers:
Anxiety and fear: Especially when outcomes or reason for hospitalization is unclear.
Stress: Related to the perception that the child is in pain or has a poor prognosis, lack of family support, burden of missed work days, additional expenses, and concerns of children who remain at home.
Strategies to assist parents/caregivers:
Provide regular information about the child’s condition, treatment, care, and prognosis. Provide a clearly communicated plan of care; encourage parents/caregivers to be part of the care team and connected with providers.
Consistent, sensitive, and thorough communication between the HCP and parents/caregivers is crucial, especially in complex medical situations.
A designated person on the health care team may be needed in complex situations to establish rapport with the parents/caregivers; a trusting, confidential relationship reduces anxiety and allows involvement in care.
A sound understanding of cultural considerations regarding views of health and illness will allow HCPs to attend more fully to the needs of the patient and family.
Specific communication strategies:
Carefully planned statements about the child’s condition to the family in critical situations is essential.
Avoid vague statements that shield the family from uncertainties and controversies.
Avoid derogatory and value-laden terminology such as “brain damage” or “retarded” as these statements can adversely influence how parents/caregivers relate to their child.
Definitive statements should be used only when appropriate and necessary.
Address parent/caregiver perceptions at the beginning of a discussion: “Tell me what you understand about your child’s condition.” This provides the opportunity to correct any misconceptions and misinformation and to hear parental concerns.
Continue to assess parental interpretations throughout discussions, providing opportunities for clarification, if needed.
Communicate in simple language that is understandable to a layperson. Communicating uncertainty by using chance estimates, even for highly educated adults, has the potential to negatively impact understanding and increase risk perceptions.
Siblings:
Many factors influence a sibling’s experience, including age, family resources, past experiences with illness, and information received about the ill sibling and illness.
Siblings of hospitalized children may experience changes in parental attention.
Common reactions observed in siblings may include:
Younger children may feel guilt for fighting with or being mean to ill sibling in the past.
Fear of becoming ill themselves.
Concern that they had a role in the development of their sibling’s illness/injury.
Nightmares of the sibling’s illness or injury.
Insecurity, anxiety, and jealousy are common reactions to the change in family roles and routines and the impact of illness on the family.
Normative sibling and family challenges will continue and are to be expected (e.g., brothers getting into fights, teasing).
Siblings learn about the ill child’s condition through clinic visits, observing the child at home, spending time with the child in hospital, and asking questions.
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