Child Relationships

Published on 09/04/2015 by admin

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Last modified 09/04/2015

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14 Child Relationships

Elana E. Evan, Harvey J. Cohen

The tide recedes, but leaves behind bright seashells in the sand. The sun goes down, but gentle warmth still lingers in the land. The music stops, and yet echoes on in sweet refrains. For every joy that passes, something beautiful remains.

— Unknown

The Relationship with the Child

When first meeting a child with a life-threatening illness, there are many unknowns. From your introduction to the patient until the day goodbyes are said, the dynamic nature of this relationship can inspire pediatric palliative care clinicians to continually learn and investigate optimal methods of caring for their patients. Your relationship, as the clinician, with a pediatric patient is of the utmost importance in promoting the best quality of life possible for this child. The development of this relationship will also facilitate treatment decision-making for the family and prevent the brunt of future hardship, such as complicated grief, that family members can experience if and when the child dies.

Building rapport with pediatric patients

Children need to trust that an adult has a genuine concern for them, rather than a superficial interest, in order to disclose the very vulnerable nature and emotional or psychological issues related to their illness. When this genuine interest is experienced by the child, a foundation for rapport can be achieved. There are elements to rapport building that occur naturally, through mere chance and chemistry, and other elements that require some preparation. Using what is known regarding patient history, allowing time for communication, such as through the child’s or your narratives, and building trust are key elements in developing rapport and establishing a solid relationship with a young patient coping with a life-threatening illness.

To the degree possible, having advance knowledge regarding the child’s medical and psychosocial history can facilitate not only the first interaction with the pediatric patient, but also with the rapport building necessary for subsequent interactions. Along these lines, bridging what is known and/or familiar to the child with new situations can be an effective strategy for building rapport. Bridging the familiar to the less familiar can be accomplished using kinetic conversations. which promote the child to act naturally within his or her environment.1 If clinicians consistently behave in the same way as other friendly adults who approach children and talk about pleasant things such as likes, dislikes, friends, or home, these types of conversations can help the clinician be associated with the good emotions these topics elicit until he or she becomes a more familiar, positive figure to the child.2

Specific communication strategies to foster rapport building include using a personal line of questioning for the patient, providing rapport building statements, and opening up conversations. Inquiries reflecting a personal line of questioning demonstrate the professional’s interest in the pediatric patient beyond the disease. These types of questions regarding topics such as favorite basketball teams, games, hobbies, increase the child’s level of comfort and encourage the child to remember pleasant times and places and re-experience these pleasant situations.2,3 Rapport-building statements, such as “let’s figure this out together”4 and using general supportive comments along with open-ended questions5 can facilitate making a connection with the older child. Younger children and those pediatric patients who are less verbal can draw pictures and write stories to express themselves when interacting with healthcare staff.6

Opening up lines of communication by reframing2 negative experiences to shine light on what is more hopeful and possible regarding the child’s quality of life is another method that can be used to establish rapport. Using allegory and storytelling, both from the healthcare provider’s perspective and by asking the pediatric patient to tell his or her story7 are other ways to proceed. Arthur Frank wrote of the importance for allowing patients time to tell their stories in a narrative fashion, without interruption, and just being present for the patient.8 Being present without having an immediate agenda, such as taking a history or conducting a physical exam, can be a powerful tool in building trust and establishing rapport.

Other trust-building strategies reflect not only how the clinician presents him or herself, but also depend on the child’s own expectancies of rapport with the clinician. Pediatric patient’s expectancies of rapport play a role in how they experience their relationship with the clinician. Children tend to feel more comfortable with newly acquainted adults when they experience them in predictable ways. For example, children meeting a clinician may feel more ready to establish rapport with the adult when they first present themselves demonstrating typical adult behavior, such as reviewing the patient’s chart rather than with atypical adult behavior, such as playing with toys. Promoting a sense of autonomy while still acting in a supportive way for the child will yield greater rapport than a controlling style.9–11 This can be achieved by respecting the child’s perspective, that is validating the child’s experience and granting the patient decision-making power where appropriate, as his or her initial perceptions affect the relationship. Even when acting in a supportive manner, if the child expects otherwise, such as a more authoritative approach, then the initial relationship may suffer. Clinicians should encourage children’s openness to the relationship, by asking what their expectations are and dispelling myths regarding the role of the clinicians.12 Trust-building can sometimes be helped along if a parent is initially present or if the clinician uses a distraction technique such as play or props.3

Daniel, 12, had multiple relapsed Hodgkin lymphoma. He was seen by the pediatric palliative care team to work primarily on establishing a quality-of-life plan while in treatment. Upon the clinician’s arrival, Daniel said he didn’t need another person trying to help him out. He told the palliative care clinician that he had managed to be in charge of his life since diagnosis and just felt that there was no need to have someone in charge of his quality of life in addition to his treatment. The clinician later discovered that Daniel thought the palliative care team became involved because his primary oncology team perceived him as not being responsible enough for his treatment. It took a couple more visits with Daniel by the palliative care team for him to realize that the palliative care clinicians were there for what he needed. The primary rapport-building strategy that the team used related to understanding Daniel’s expectations and allowing him the opportunity to be autonomous and in control of his quality of life while the palliative care team acted as a consultant in a supportive role.

Influence of Familial Relationships

The child is part of a larger unit, the family. When considering how, what, where, when and if to speak with the child about palliative care and end-of-life issues, the history, and familial mechanisms and extents of communication must be appreciated. Acknowledging the individual child’s role in the larger family unit, while taking into account the generational attitudes that affect issues, such as treatment decision-making and paying heed to how the course of illness influences family roles, can assist the clinicians in caring for their pediatric patients. It can be helpful to understand the extent of how protective parents have been in discussing aspects of the child’s illness or other traumatic events that have occurred in the past. This will have a major influence on how they feel about communicating information and its implications to the child in the current situation. Therefore, it is important to assess the willingness for parents to share information early in the course of the child’s illness, and to try to assist the parents in being as open and as truthful as they can in a developmentally appropriate fashion. It is often helpful to discuss with the parents how the child’s sense that being told the truth can allay their child’s fears, and that attempting to hide certain aspects of the disease and its consequent therapy may increase fears, and lead to the child no longer trusting the parents.13

In many families it is not only the parents that deserve consideration in healthcare care related discussions. Often, families include at least three generations, and attitudes of the grandparents toward discussing issues with children also influence the approach to the parents. With the additional stressors of life-threatening and life-limiting disease, the clinicians caring for the child can take into account the complexity of the prior and current intra- and inter-family interactions and psychological issues, including divorce, and how these may affect discussion with the child.

The role of the child in the family and the ability of the clinician to help guide the family is a dynamic process that can be dependent on the stage of disease. Often, early after the diagnosis, protecting the child seems most important, and because there has not as yet been the opportunity to establish a relationship with the clinicians, the ability to guide families may not be optimal. With time, especially if the family feels more comfortable that the clinicians care for their child and his/her overall well-being, increased trust may develop, and guidance by the healthcare provider is much more accepted by the family. However, when the disease trajectory changes, and issues related to palliative rather than curative care are being discussed, there may again be reluctance to burden the child with information or choices.14,15 It is important both to respect the feelings and needs of the family and at the same time try to help them speak with their child and permit you to do the same.16 Determine if the family is willing to allow these discussions to occur only in their presence, or permit private discussions between the clinicians and the child. It is often helpful to tell parents that sometimes children try to protect parents in the same way that parents try to protect children, and that their child might feel more comfortable discussing his or her concerns without them present.

For adolescents with life-threatening illnesses, it is even more important to determine how the family affects them and the ability of the clinicians to discuss important issues. While it might seem as if families would be more willing to allow discussions relating to palliative and end-of-life care with teenagers, again, the history of communication within the family and the decision-making processes need to be examined. In part, because the concept of death and its finality is more developed in adolescence, some families are even more uncomfortable in having clinicians discuss these issues. Establishing good and open relationships with both the parents and child can have a major impact in how accepting the parents are in having these conversations occur.

There are times, such as in the case of Maria, however, when family and cultural issues can have profound effects on the ability to communicate with the child about important issues.

Maria, 16, had advanced soft tissue sarcoma and came to the hospital from Greece for experimental therapy. She was a bright and highly interactive young woman. She had not been told that she had cancer, but had been told by her mother that she had tuberculosis and needed special therapy. One of the conditions the physician agreed to in caring for this child was that he would not tell her about her condition.

Maria’s cancer initially responded to the therapy, but after a year, in which the doctor established a good relationship with both Maria and her family, there was concern about disease recurrence. A lung biopsy was recommended to diagnose the problem. Again, the physician approached the family and asked if he could discuss the nature of Maria’s condition with her before they spoke about surgery. Because they now trusted him, they said that he could have that discussion. He then met with Maria, alone, and mentioned that he had been treating her for over a year, and asked whether she would like to know what disease she had. Despite coming to an oncology clinic, and being transported in a van from the American Cancer Society, Maria said that she did not want to know. The biopsy showed recurrent disease, and Maria and her family returned to Greece, where she died a few months later. The family was extremely grateful for the care Maria received and the respect they received regarding their familial and cultural mores.

Clearly Maria knew what the disease was, but based on the messages she had received from her family, not talking about the nature of her disease was part of the family coping. This demonstrates how cultural and family relationships can greatly influence how and what is communicated to the child. The complexities of family relationships do affect all aspects of communication with children and adolescents, but they do not make these interactions impossible. Understanding and respecting family structures and values by the clinicians are necessary for establishing the best approach to discussing palliative and end-of-life care with the child, and thoughtful and caring guidance of the family during the illness can optimize the potential for effective discussions.17

Communication Across the Disease Course

Communicating with a child who has a life-threatening illness is often a very daunting and heart-wrenching task, even for pediatric clinicians with years of experience. Little training is offered on how to approach end-of-life communication with children.18 In addition to dealing with the pediatric patients, healthcare providers must deal with the emotions of parents. Sharing information at the beginning of the illness with the child can establish trust; however, end-of-life issues should be discussed only if the clinician has already developed trust and a rapport with the patient.19

Frank discussions about death with children still remain relatively uncommon in most acute pediatric settings. Unfortunately medical staff tend to comply with parents’ well-intentioned, but potentially detrimental requests, for non-disclosure regarding the child’s prognosis. Staff members find themselves worrying that any confrontation with parents may harm the fragile trust that has taken a long time to develop with the family. While aiming to respect parental decision-making authority, communication obstacles regarding disclosure to the child can cause clinicians to feel despair and grief about the impending loss of their pediatric patients. They can also incur a sense of moral distress if they are unprepared to provide sufficient support for the dying child.20 Published guidelines stress the importance of open, honest communication with dying children, but there is relatively little information available regarding concrete suggestions and practical help regarding disclosure discussions and post-disclosure support.21,22

At diagnosis, the healthcare team sets the groundwork for trust and honesty in their relationships with parents and patients, so parents will feel comfortable to allow independent clinician-child interactions. The best approach is a flexible one that adapts to the child’s and family’s needs. In adolescents, the approach also needs to foster personal growth of the patient throughout his or her experience with illness. Clinicians should take opportunities to promote decision-making in simple choices, such as allowing the child to choose the flavoring for oral medication.23

Assessing for communication barriers occurring within the family while asking open-ended questions in order to establish a framework for communication with the child throughout the disease course can be accomplished using strategies such as Beale’s19 6 Es for communicating with the dying child. These 6 Es are:

1. Establish agreement with the child early in the relationship that open communication is critical to the relationship.
2. Engage the child at an appropriate time. A newly diagnosed serious illness or a moment during the disease course when a child’s physical or emotional health may be taking a turn for the worse, are opportunities for initiating discussions.
3. Explore what the child already knows and wants to know about the illness. This allows the clinician an opportunity to correct misunderstandings about the medical facts and to provide information according to how the child wishes for information to be given.
4. Explain medical information according to the child’s needs and age.
5. Empathize with the child’s emotional reactions. When the clinician empathizes, “It seems like you are really worried about this,” it validates, “we really care that you’ve been upset,” and clarifies, “what have you been thinking about?” Then the child is given permission to be upset and express his or her feelings, that will allow for opportunities for discussion of more concrete concerns.
6. Encourage the child by reassuring him or her that you will be there to listen and be supportive. Anxiety regarding a child’s family and friends and worries about symptoms such as pain are the major concerns for children who are dying. Being present and genuinely acknowledging these concerns is helpful for the child.

Communication strategies such as the 6 Es can also be helpful in eliciting information to create a preliminary quality-of-life plan for when the child is first diagnosed with a life-threatening illness. This important element to the plan of care will allow for all members of the child’s team to have clear expectations of who is accountable for what elements of the child’s care and will also promote clear communication for future care coordination.24

During the treatment phase, the clinician must be clear in his or her communications with the child regarding the nature and course of the illness and possible treatments. If age appropriate, helping the child weigh important treatment decisions can be accomplished through “what if questions,” such as “what if a clinical trial is available to you, but it means feeling extreme nausea and fatigue for many months—would this be something you would like to consider?” Communicating choices that offer a degree of independence, such as time away from the clinician and hospital, is also something that can provide empowerment to the child during the treatment phase.23

Children have discussed their preferences for interpersonal relationships with their healthcare team. In multiple studies that queried the child directly, their main concerns revolved around communication. Overall, they appreciated openness and honesty; expressed needs for reassurance, support, and empathy, as well as to be taken seriously; while having sufficient time to talk, explain, and come to terms with their illness and treatment.25,26

Regarding information exchange preferences, a group of seven Dutch cancer patients, ages 8 to 17 years, participating in a study stressed their rights to be fully informed about their illness and treatment, but this varied slightly depending on the individual child’s survival rates and prognosis. Clarity on information about illness and treatment, age-appropriate language, and content of information were also identified as important. However, they wanted only general information during diagnosis, and then more detail in subsequent consultations. They commented that the majority of information was lost due to the shock at diagnosis, thus repeating explanations and answering questions were key elements to meetings with the healthcare team. At times, this group of patients preferred to use their parents to facilitate communication with their physician; however, they wished to be able to reach their healthcare provider, themselves, at all times. Preferences included wanting to collaborate in making decisions, but they admitted that sometimes they were prevented from doing so.25

At end-of-life, communications regarding physical issues (such as symptom management) as well as discussions around more existential issues (such as what they wish to leave behind for people to remember them by) are critical to the well-being of the child. It is important, once again, to assess the child’s awareness and how much knowledge the child would like to have regarding his or her stage of disease. Clinicians can use multimodal methods, such as simple drawings, other visual aids, play, and/or written materials that include verbal communication to provide pediatric patients with information about end stage disease. During end-of-life care, clinicians, listening to fears and praising strength, and pausing for silent reflection, can help patients achieve peace of mind despite a terminal prognosis.27 Often, just hearing that their clinician will be there for them allowed patients to feel comforted and not abandoned27,28 (Table 14-1).

TABLE 14-1 Communication Strategies for Use with the Child Across the Disease Course

Diagnosis
• Build rapport
• Assess any family barriers in communicating directly with the child
• Open-ended questions to assess child’s role in family, current lifestyle, definition of quality of life
• Establish framework for open communication with the child across disease course

Treatment
• Clarify child’s understanding of illness and course of treatment
• Depending upon age, ask “what if” questions to present possible prognostic scenarios and determine child’s wishes
• Use empowering statements to help child tailor own quality of life plan

End of Life
• Use multimodal methods (drawing, written, verbal) to discuss end-of-life care plan
• Allow silence and space for reflection
• Offer comforting words and create moments for legacy-building activities

Developmental Issues in Speaking with Children about Palliative Care and Death

Developing an understanding of life, death, illness, and how one sees relationships with parents and others in light of this knowledge is a process that occurs in childhood and adolescence. These changes are important for clinicians to understand so that they may guide children to comprehend and respond to information regarding their illness and its implications. This is especially true for discussing death and palliative care with a child who is terminally ill.

Questions typically arise regarding whether the child should be told that he or she is dying, who should discuss this with the child, and how should the child be told. The answers to these questions require individual assessments as to the readiness of both the child and family to hear the information, and the additional issues of children’s and adolescents’ changing concepts of death that occur with development.

While there is not much known about what the child senses, even without discussions, it has been reported that young children who were terminally ill displayed greater anxiety than children who did not have a life-threatening illness.13 What was also clear from this study was that even though the terminally ill children were not told they were dying, many were aware of it, as demonstrated by the tales they told involving death.

There are a number of myths concerning children in terms of their grief and their awareness of their situation. Children do grieve loss although they may express it differently, they grieve as much as adults, they cannot be protected from death, and grief in children has no time limits. Despite belief to the contrary, terminally ill children typically know they are dying, thus adults’ denial can be ineffective in protecting children from this knowledge.29

While there are definite stages of development that children and adolescents go through, when, how, and what affects this development may be variable and influenced by having a chronic, life-threatening illness. The guidelines described below are important to understand, but it is equally important to realize that individuals mature at different rates and not all aspects of development occur together.30

An overview of children’s concepts of death as a function of age is presented in Table 14-1.29

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