Respectful Interaction

Working with Newborns, Infants, Toddlers, and Preschoolers

I mean, this is not, you know, a piece of machinery that . . . we want to make work. It’s, it’s a child and he, you’ve got all those dynamics of mom and dad, and grandma, and brothers and sisters. And, and you know, all of those things need to be, are, are just as important, just as important as whether that kid is breathing or not. . . . Part of the recovery of the child depends on, and their future depends on, dealing with these issues, too. Because of the attachment that the family has for that child.

—Pinch and Spielman 1

Chapter Objectives

The reader will be able to:

• Discuss the role of the family as collaborators in respectful interaction with newborns, infants, toddlers, and preschoolers

• Identify five realms of family health that can lend insight into family and patient dynamics

• Make several suggestions that will help support healthy functioning of the family during a child’s illness

• Distinguish some basic developmental differences that need to be considered in one’s approach to newborns, infants, toddlers, and preschoolers

• Discuss in general terms Erikson’s sequential view of the psychological development of infants and toddlers

• List some everyday needs of the infant that may help explain an infant’s response to the health professional

• Describe the steps showing how a consistent approach usually builds trust in an interaction with infant patients

• Describe six types of play, and show how each can facilitate respectful interaction with a pediatric patient

• Describe how the young child’s developing need for autonomy enters into the health professional and patient relationship

All health professionals will interact with newborn, infant, toddler, and preschool patients at some time, and some health professionals will work solely with these groups. These small patients must be treated with the respect they deserve as unique individuals like everyone else. Furthermore, the opportunity they are given to experience human dignity and support in their time of illness, injury, or other adversity can become a resource to help them manage future difficulties.

Most of us take for granted that a newborn will live into his or her 7th or 8th decade of life. This has not always been so and is presently not so in many developing countries. Today, the average infant mortality rate is 6.14 infant deaths per 1000 live births.2 However, the overall infant mortality rate is not shared equally by all groups. Mortality is higher for infants and children in poor families with poor living conditions. The mortality rate for black infants is more than twice that for white infants. Better opportunities for health education and overall longevity in white groups point to deep, internal health disparities, the consequences of which must be reckoned with. As a health professional you will need to call on your skills and knowledge to reach solutions that help close the disparities gap. Being more aware of cultural issues and unconscious biases can enhance the delivery of quality, nondiscriminatory health care.³

This is the first of several chapters that will examine your interaction with patients across the lifespan. It begins with the family as a focus of care and then moves to working with new parents and newborns, infants, and toddlers. The section on growth and development includes information that applies across childhood and adolescence as well, although working with each age group has its own challenges. Provided here is a wide range of relevant topics concerning interaction with young patients that should provide a basis for more in-depth exploration in your other coursework during your professional education.

Human Development and Family

In the past, mainstream health care in the United States focused exclusively on the patient as the sole recipient of care. It was not commonplace to attend to families as the focus of care. Today we know how important it is to care for patients, especially children, in the context of their families: The family is implicitly and explicitly recognized as a critical context surrounding and influencing its members and, in turn, being influenced by its members. We will begin by discussing the evolving concept of “family” in contemporary society. If you are to work with families as collaborators in maintaining the health of children and in the care of ill, injured, or disabled family members, then you must understand how families define themselves, how they function, and how best to interact with them.

Family: An Evolving Concept

The term family has been defined in a variety of ways. How would you define family? It is safe to say that your notion of what constitutes a family is influenced by your values, culture, upbringing, and professional perspective. For example, a sociologist may define a family in terms of its socioeconomic status, or a psychologist may focus on the interpersonal dynamics of individuals who claim family ties. The most common type of familial bond is through spousal and blood relationships. Families may include several generations of blood kin, a mix of stepparents and children, or a combination of friends who share in household responsibilities and childrearing. However, none of these definitions is sufficient to describe the types of relationships and arrangements that make up the modern family. One area of growth in family units is same-gendered parents with adopted children. As society evolves through scientific and social advances, it must redefine what is meant by “family.” The Institute for Patient and Family Centered Care (IPFCC) defines family as “two or more persons who are related biologically, legally, or emotionally.”4

REFLECTIONS

• How do you define family? Who are the members of your family?

• Name two ways your family contributes to your health and two ways your family distracts from your health

• If you were acutely ill, which member of your family would you call first and why? How does this family member support you in your day-to-day life?

A definition of family should be inclusive and allow the members of a family to define themselves as a family unit, acknowledging the variety of cultural styles, values, and alternative structures that are part of contemporary family life. In fact, families define a unique culture; that is, a unique behavioral complex that is socially created, readily transmitted to family members, and potentially maintained through generations.5

Family structure and function have an important influence on health. Family structure involves the characteristics that make a family unique. This includes family composition and household roles. For example, in one family the parents may be married and living together, whereas in another, the parents may be unmarried and living separately. Some families have two working parents; others have one. According to the U.S. Census Bureau’s America’s Families and Living Arrangements: 2010, the average household size was 2.59. The percentage of households headed by a married couple who had children younger than 18 living with them was 21%. Of the 74.6 million children younger than 18 in 2011, 69% lived with two parents, whereas another 27% lived with one parent and 4% lived with no parents.⁶ Among the children who lived with one parent, 87% lived with their mother. In 2010, 10% of children lived in a household with a grandparent and 23% of children lived in a household with a stay-at-home mom. Of note is that the percentage of children living with two parents varied by race and origin—78% of Asian children lived with two parents compared with 38% of black children.⁷

To work with families, you also must understand how families function. A child’s physical and emotional health and cognitive/social functioning is strongly influenced by how well the family functions.⁸ There are numerous family theories describing how families operate and how they respond to events both internal and external. Most health professionals use a combination of family theories in their work with children and their families, but all have in common the fact that the focus of health care shifts from the individual member who is ill, injured, or disabled to the family as a unit of care. In this chapter we focus on a particular method of viewing the family—the family health system approach.⁹ According to this approach, care is directed toward five processes: (1) interactive, (2) developmental, (3) coping, (4) integrity, and (5) health. The story of Ian will help you by showing how the family health system model applies to a particular child and his family.

Ian was a low-birth-weight infant with short bowel syndrome. Short bowel syndrome is characterized by maldigestion, malabsorption, dehydration, electrolyte abnormalities, and both macronutrient and micronutrient deficiencies. Owing to new medical and surgical treatments, the survival rate ranges from 73% to 89%.¹⁰ Ian will require long-term parenteral nutrition (PN); that is, he will not be able to take food orally and will be dependent on intravenous solution to provide the bulk of his nutritional needs. Ian is the first child of Dylan and Adrianna Chapel, both in their early 30s. After a stay in the neonatal intensive care unit (NICU), Ian was sent home with his parents, who have provided care since that time with the help of a home care agency and a nutritional support company. The Chapels do not have other family members nearby. The majority of Ian’s care falls to them.

Ian is now an active 2-year-old. Mrs. Chapel is the primary caregiver during the day and most evenings. She works weekends as a nursing assistant at a local assisted living center to supplement their family income. Mr. Chapel works as a paralegal in a law firm and attends law school at night. The Chapels’ insurance coverage is through a group plan at the law firm where Mr. Chapel works.

Assume you are assigned to work with the Chapel family during an on-site educational experience with the home care agency providing primary care. The goal of your interaction with Ian and his family is to help promote family adaptation to his chronic condition (short bowel syndrome) and to empower the Chapels to develop and maintain healthy lifestyles. By reviewing the five processes listed earlier, you can get a picture of the family’s functioning and possible areas for intervention.

Interactive Process

The interactive process of the family is composed of communication, family relationship, and social supports.9 In your assessment of the interactive process of the Chapel family, you will explore the types of communication patterns they use; the effect of Ian’s illness on the communication of the family both internally and externally; the types of relationships within the family; and the quality, timing, amount, and nature of social support they receive. Open communication should be encouraged. One aspect of care could be to assist the Chapels in mobilizing the informational and emotional support they need to cope with Ian’s illness. Because the Chapels do not have family support in the immediate community, they may have to rely on informal support systems, such as friends and co-workers, and formal support systems, such as respite care agencies, to assist them in the care of their child. Perhaps there are other children who have short bowel syndrome or who have to rely on parenteral nutrition in the community. The caregivers of such children may have or could form a support group to help troubleshoot common problems and offer advice.

Developmental Process

Assessment of the developmental process includes the family developmental stage and individual developmental stages. The Chapels, as a family, are in the second stage of family development as described by Duvall in his classic work.11 Stage II of the family life cycle involves integrating an infant into the family unit, accommodating to new parenting roles, and maintaining the marital bond. Ian is moving from infancy to becoming a toddler, and soon he will be increasingly interested in his environment and want to explore it. Ian will become increasingly mobile and develop language during this stage. (You will be introduced to basic development needs of toddlers later in this chapter.) All of this is influenced by the presence of his chronic condition.

Therefore, it would be appropriate for you to assess how well these developmental tasks are being achieved. You will educate the Chapels in the developmental milestones Ian should achieve and the tasks involved. For example, Ian needs freedom of mobility to explore objects in his environment and learn to walk, so his nutritional solution could be placed in a backpack to allow him to move more freely. Children with short bowel syndrome may also require frequent visits to the bathroom throughout the day when the time comes for toilet training. To decrease the Chapels’ frustrations, you could plan ahead for this next developmental milestone and work with them to plan a structured routine that is consistently implemented and results in success for all involved, especially the child. There is some evidence that about 10% to 15% of children with short bowel syndrome will experience neurological or developmental delays.¹² Thus, you will also want to watch for possible developmental delays to plan for early therapeutic interventions.

Coping Process

Coping has been identified as problem-solving, adaptation to stress and crisis, and management of resources.9 Coping helps us lower our anxiety so that we can meet the demands of the day. Each person has a different coping style when dealing with uncertainty. Coping styles can be both problem focused and emotion focused. In general, coping styles depend on what you are like as a person and your role in the family.¹³ The uncertainty of illness presents a variety of stressors for families. In your work with the Chapels, you should assess their ability to handle stress and the impact that Ian’s illness has on everyday activities.

REFLECTIONS

Which of these questions would most help you show respect for the Chapels’ predicament?

• How do the Chapels conceptualize and manage Ian’s diagnosis as a family? What meaning does it have?

• Has Ian’s illness caused a change in the family’s life plans? For example, did Mrs. Chapel plan on returning to full-time work outside the home after the birth of her son?

• If so, can the family adapt to the loss of income or are support services available to allow Ian to be cared for during the day so that Mrs. Chapel can work?

• Were the Chapels intending to have several children? Have Ian’s care needs changed this?

• What else do you want to know in order to care for the Chapel family?

Overall, you would want to assess how the family deals with crises in general.

You can support the Chapels’ coping processes by offering advice on the progression of the illness, discussing the normal feelings of frustration and guilt that accompany the care of a chronically ill or disabled family member, and offering resources to help the family cope more effectively, such as respite care and other support groups. Can you think of others?

The Chapels will also have to cope with financial difficulties. Even with the best health insurance, there are lifetime limits on coverage; in addition, there are many out-of-pocket expenses related to the care of a child with this diagnosis. Although most children experience small bowel adaptation over time and can be weaned from parenteral nutrition, most children require numerous surgeries, including an intestinal transplantation.14 Thus, the Chapels may be facing years of out-of-pocket expenses and expensive hospital stays, procedures, and medications. This kind of financial pressure can be stressful for any family.

Integrity Process

The integrity process of family life involves family values, rituals, history, and identity.9 These aspects of the family process greatly affect its behavior. Family rituals, one facet of the integrity process, provide a useful framework for assessing threats to a family’s integrity. Family rituals include celebrations and traditions such as activities surrounding birthdays, religious holidays, or bedtime routines for children (Figure 14-1). Suggestions for evaluating family rituals include assessment of the following¹⁵:

FIGURE 14-1 The process of family life involves family values, rituals, history, and identity. (© Getty Images/84116)

Does the family underutilize rituals? Families who do not celebrate or mark family changes such as birthdays, deaths, anniversaries, and so forth may be left without some of the benefits that accompany rituals, such as bringing the family together or marking changes in life and family roles.

Does the family follow rigid patterns of ritual? In families who are inflexible, things are always done the same way, at the same time, and with the same people. Families who are rigid do not respond well to necessary changes that disrupt routines and rituals occasioned by illness and injury.

Are family rituals skewed? A family with skewed rituals tends to emphasize only one aspect of family life (e.g., religion) and ignore others. For example, a family might spend all of its time celebrating with the father’s side of the family on religious holidays and ignore the different rituals cherished by the patterns practiced on the mother’s side.

Has the ritual process been interrupted? For example, the birth of a disabled or chronically ill child may threaten family identity and permanently disrupt family rituals. In the case of the Chapels, they have elected to stay home for traditional family holidays because almost all holidays involve a focus on food. For the foreseeable future, Ian cannot tolerate most food orally, so the Chapels will have to consider what this interruption in ritual means to their life together and may have to develop other rituals at holiday time that do not focus so prominently on food.

Are the rituals hollow? Rituals that are performed just for the sake of performing them have lost their life and may be stressful for the family rather than a source of joy and strength.

In addition to changes in ritual that occur over time in families, many role changes also occur, particularly when chronic illness or impairment is involved. For example, Mrs. Chapel has become the primary caregiver. She may or may not have expected to take on this role. Essential interventions include helping the Chapels redefine major family roles and maintain their new responsibilities.