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Contents

30.1 Children’s Understanding of Death . . . 431

30.1.1 Infants and Toddlers (0–36 Months) . . . . 431

30.1.2 Preschool Children (3–5 Years) . . . 431

30.1.3 School-age Children (6–12 Years) . . . 433

30.1.4 Adolescents (13–20 Years) . . . 433

30.2 Explaining Death to Children . . . 433

30.3 Pediatric Palliative Care . . . 433

30.3.1 Principles . . . 433

30.3.2 Location of Care . . . 434

30.4 Grief . . . 434

30.4.1 Principles . . . 434

30.4.2 Assessment of Child and Family . . . 436

30.4.3 Interventions . . . 436

30.5 Cultural and Spiritual Care . . . 438

30.5.1 Principles . . . 438

30.5.2 Assessment of Child and Family . . . 438

30.5.3 Interventions . . . 438

30.6 Bereavement . . . 439

30.6.1 Principles . . . 439

30.6.2 Assessment of Child and Family . . . 440

30.6.3 Interventions . . . 440

30.7 Resources . . . 440

30.7.1 Resources for Children . . . 440

30.7.2 Resources for Adults . . . 441

References . . . 441

Bibliography . . . 442

30.1 Children’s Understanding of Death

Understanding death is a never-ending process that begins in childhood. An individual’s concept of death matures as he or she ages (Grollman, 1990). Chil- dren’s concepts of death are influenced by their per- sonal experiences with death and by explanations and attitudes of those around them (Table 30.1).

When children’s questions about dying and death are avoided, their fears are magnified. Nurses can assist parents in their children’s age-specific understanding of death (Ethier, in press).

30.1.1 Infants and Toddlers (0–36 Months) It is unknown how preverbal children view death, but it is believed that they have no concept of it. Some toddlers perceive death as temporary. Infants and toddlers are affected by their parents’ emotional and physical state and respond to the emotions of those around them. They react to separation from care- givers and to alterations in routine and surround- ings. Behavioral responses can include crying, fussi- ness, clinging, biting, hitting, turning away, with- drawal, regression in speech or toileting or both, and changes in eating patterns (Ethier, in press).

30.1.2 Preschool Children (3–5 Years)

Preschoolers have a limited understanding of death.

They perceive death as a state of being less alive, com- parable to the state of someone who is sleeping or who goes away on a trip. They view death as re- versible and temporary. Preschoolers’ magical think- ing can lead them to believe that their misdeeds or

Care of the Dying Child and the Family

Angela M. Ethier

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thoughts have caused their illness or the illness of family members. As a result, they might feel guilty and responsible for having caused someone’s illness or death. Preschoolers hear the literal meaning of words (Ethier, in press). Therefore, euphemisms re- garding death (e.g.,“pass away,”“lost”) should not be used (Grollman, 1990). Children at this age who hear death as “gone to sleep” may fear going to sleep for fear of dying. Their greatest fear about death is being separated from their parents. Children of this age of-

ten hear, see, and understand more than adults are aware that they can. Their ideas and feelings of death are strongly influenced by their parents’ reactions.

Because of their limited coping strategies for dealing with loss, they may appear to be indifferent, being unable to tolerate feelings of grief for long. Playing can provide them with relief and an alternative method of coping. Behavioral responses among preschoolers can include asking repeated questions, complaining about physical symptoms (stom-

Table 30.1. Children’s understanding of death and characteristic behaviors

Understanding of death Characteristic behaviors

Age 0–3

Does not comprehend death Altered sleeping patterns

Aware of constant activity in the house Irritable

Aware of Mom and Dad looking sad Clings to others

Aware that someone in the home is missing Age 3–5

Sees death as temporary and reversible; Concerned about own well-being continually asks if person will return Feels confused and guilty

May feel ambivalent May use imaginative play

Through magical thinking, may assume responsibility for the death Withdraws Irritable Regresses Age 6–9

Begins to understand concept of death May seem outwardly uncaring, inwardly upset

Feels it happens to others May use denial to cope

May be superstitious about death May attempt to “parent”

May be uncomfortable in expressing feelings May act out in school or home Worries that other important people will die May play death games Age 10–12

Accepts death as final May appear tough or funny

Has personal fear of death May express and demonstrate anger or sadness

May be morbidly interested in skeletons, gruesome details May act like adult, but regress to earlier stage of

of violent deaths emotional response

Concerned with practical matters about child’s lifestyle Adolescents

Has adult concept of death, but ability to deal with loss is based Allow for informed participation on experience and developmental factors Encourage peer support

Experiences thrill of recklessness Suggest individualized and group expressions

Focuses on present of grief

Develops strong philosophical view Recommend creative outlets

Questions existence of an afterlife (e.g., writing, art, and music)

From Hellsten MB, Hockenberry-Eaton M, Lamb D, Kline N, Bottomley S (2000) End-of-life care for children. Texas Cancer Coun- cil, Austin, TX, pp. 68–69. Copyright 2000 by the Texas Cancer Council. Reprinted with permission

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achaches, headaches), showing signs of regression, displaying intensification of their normal fears, hav- ing emotional outbursts, displaying irritability, and undergoing disturbances in their eating and sleeping patterns (Ethier, in press).

30.1.3 School-age Children (6–12 Years)

School-age children have a deeper understanding of death, although 6–9-year-olds may continue to be- lieve that their own thoughts or misdeeds can cause death and may feel guilt and responsibility for death.

They frequently personify death as someone who comes in the night, dressed in black. By the age of 9–10 years, they typically understand death in realis- tic concepts and view it as final and universal. School- age children ask more questions about life and death than younger children do. They tend to ask questions about what happens to the body after it is dead. They are aware that they can die, and they fear death. Dy- ing is viewed as a threat to the school-age child’s se- curity. Their behavioral responses can include asking repeated questions, experiencing eating and sleeping disturbances, complaining about physical symptoms (stomach aches, headaches), displaying intensifica- tion of normal fears, having emotional outbursts and exhibiting irritability, and showing signs of regres- sion (Ethier, in press).

30.1.4 Adolescents (13–20 Years)

Adolescents understand death much as adults do.

They ask about dying and death and search for the spiritual meaning of what follows it. Their immediate concerns may relate to their physical appearance and to being different from their peers. Isolation from their peers and increased dependence on their fami- lies are difficult for adolescents. They often display intense emotional reactions towards dying and death, and their behavioral responses can include anger, withdrawal, an intensified fear of death, and risk-taking behaviors, such as reckless driving, drug use, and sexual activity (Ethier, in press).

30.2 Explaining Death to Children

Approach the discussion of death with a child gently.

“What is said is significant, but how you say it will have a greater bearing on whether youngsters devel- op morbid fears or will be able to accept, within their capacity, the reality of death” (Grollman, 1990, p. 1).

Grollman (1990) advises beginning the discussion of death with a child by using a nonthreatening example such as trees and leaves and how long they live. Speak on the child’s developmental level, providing basic in- formation slowly, directly, and honestly (Fochtman, 2002). Allow the child’s questions to guide the discus- sion, avoiding unnecessary or unwarranted informa- tion. Avoid the use of euphemisms (“pass away,”

“lost”), and use words such as “die” and “dead.” Allow the child to express his or her feelings, while accept- ing whatever emotions the child expresses. Provide warmth and support during the discussion, and speak with a calm and reassuring voice. Ask the child to repeat what has been discussed in order to clarify any misconceptions (Hellsten et al., 2000). Books or movies can be used to encourage discussion (Focht- man, 2002). Play, art, and music can facilitate the child’s expression of feelings. Encourage family members to discuss the child’s impending death openly and honestly with the child and other family members, including siblings (Ethier, in press).

30.3 Pediatric Palliative Care 30.3.1 Principles

Pediatric palliative care is family-centered, encom- passing the child and the child’s family members (Fig. 30.1) (Fochtman, 2002). The goal of palliative care is to attain the best quality of life for the dying child. Care is transitioned from curative to palliative, with a focus on managing symptoms to promote comfort (Ferrell and Coyle, 2002). A model of pedi- atric palliative care, Fig. 30.1, depicts the child and family as the center of care that addresses their phys- ical, psychological, spiritual, cultural, and social needs. An interdisciplinary team is utilized to build systems and mechanisms of support. It involves con-

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tinuity of team members and shared decision mak- ing consisting of open communication and respect for the goals, preferences, and choices of the child and family to guide the child’s medical care (Last Acts, 2003). Palliative care affirms life and views death as a normal process. It does not hasten or postpone death.

Bereavement care is provided to family members fol- lowing the child’s death (Fochtman, 2002).

30.3.2 Location of Care

It is important to determine the child’s and family’s preference for the location of palliative care. Pediatric palliative care can be provided in the hospital or home, or sometimes in the hospice setting. Often, the child and families will move among the various set- tings. Care in the hospital can be provided amongst familiar staff and surroundings, with consistent in- terdisciplinary team members providing care. The hospital setting affords immediate access to medica- tions for pain and symptom management. Home care

provides the necessary supplies, medications, and pe- riodic nursing visits to allow the child to receive care at home, and hospice provides supportive care to the dying child and family members in the child’s home (Ferrell and Coyle, 2002). An interdisciplinary team, trained in the care of dying individuals and their families, provides the care. Bereavement care is pro- vided to the family members following the child’s death. Respite care is sometimes available in an inpa- tient hospital or hospice setting. Unfortunately, only a limited number of hospices in the United States provide care for children.

30.4 Grief 30.4.1 Principles

Grief is the emotional reaction to anticipated or ac- tual loss and is exhibited by both children and adults (Table 30.2). Buckman (1996) describes grieving as a continuous process that usually follows three stages.

Figure 30.1 Model of pediatric palliative care

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The initial stage of grief involves shock and deep sad- ness. Physical symptoms (e.g., nausea, pain in the chest or throat, general aches and pains) during this initial phase are common. The middle phase involves realizing that the living individual’s life will go on.

Anger and resentment towards those who have not lost a child or sibling can occur. The final phase in- volves the resolution of grief, being able to remember the person who has died without acute pain and dis- tress. Most individuals never completely resolve their

grief, but rather achieve a degree of resolution (Buck- man, 1996). Children and adolescents rework their loss and grief as they mature and achieve develop- mental milestones (Ethier, in press). Children work through grief through play, art activities, conversa- tion, introspection, and written expressions (Ethier, in press). Adults work through grief through verbal, written, physical, and creative expressions. Sharing grief is often therapeutic (Hellsten et al., 2000).

Table 30.2. Normal grief symptoms Physical/behavioral*

Accident proneness Allergies/asthma Appetite changes Constipation/diarrhea Dizziness/dry mouth Heartache

High blood pressure Hives/rashes/itching Indigestion

Insomnia/oversleeping Loss of appetite/overeating Low energy

Low resistance to infection Migraine headaches Muscle tightness Pounding, rapid heartbeat Recurrent nausea Restlessness

Sexual disinterest or difficulty Stomachache

Tearfulness Weakness in legs Emotional/social Agitation Anger

Angry outbursts Anxiousness Complacency Critical of self

Difficulty in relationships Exaggerated positive behaviors Fear of groups or crowds

From Hellsten MB, Hockenberry-Eaton M, Lamb D, Kline N, Bottomley S (2000) End-of-life care for children. Texas Cancer Coun- cil, Austin, TX, p. 69. Copyright 2000 by the Texas Cancer Council. Reprinted with permission

* Any recurrent physical reaction should be evaluated by a physician to rule out the existence of a condition that may require medical treatment

Guilt feelings Indecisiveness Irritability Jealousy Lack of initiative Loss of interest in living Moodiness

Nightmares Rumination Sadness Suspiciousness Thoughts of own death Withdrawal from relationships Intellectual

Confusion

Difficulty concentrating Disbelief/denial Errors in language usage Forgetfulness

Inattention

Lack of attention to detail

Lack of awareness of external events Loss of creativity

Loss of productivity Memory loss Overachievement Past-oriented Spiritual Anger at God

Feelings of abandonment

“Why” questions

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Complicated grief is defined as the intensity and duration of behaviors, as shown in Table 30.3, persist- ing over several months (Field and Behrman, 2003).

There are four types of complicated grief: chronic grief, delayed grief, exaggerated grief, and masked grief (American Association of Colleges of Nursing and City of Hope National Medical Center, 2003).

Chronic grief reactions continue over long periods of time. Delayed grief reactions are suppressed, and the individual consciously or unconsciously avoids the pain of the loved one’s death. Exaggerated grief in- volves the individual’s resorting to destructive be- haviors, including suicide. Masked grief manifests it- self when individuals are unaware that their behav- iors are interfering with normal functioning as a re- sult of their loss (American Association of Colleges of Nursing and City of Hope National Medical Center, 2003). Complicated grief symptoms may necessitate referral to a mental healthcare provider (Table 30.3).

Suicidal thoughts or actions and expressions to inflict hurt on another require immediate professional care (Hellsten et al., 2000).

30.4.2 Assessment of Child and Family

A grief assessment should include the child; the fam- ily members, including siblings; and significant oth- ers. Assessment begins at diagnosis and is ongoing throughout the child’s care and following death dur- ing the bereavement period (American Association of Colleges of Nursing and City of Hope National Medical Center, 2003). Cultural and spiritual beliefs should be considered for each individual because these may affect the grief process.

30.4.3 Interventions

Interventions for the child (Table 30.4) and family (Table 30.5) should include educating them about the grief process; encouraging mutual participation among family members, including siblings, in caring for the child; providing the child and family with a safe and nonjudgmental environment in which to ex- press their grief while supporting them with expres- sions of acceptance, patience, and respect; facilitating honest, open communication among the child, par- ents, siblings, and the healthcare team; avoiding eu- phemisms and trite expressions; assisting the child and siblings to express their feelings through the use of play and creative activities (e.g., providing art sup- plies, musical instruments, puppets, toy figures); edu- cating the family about their child’s age-specific un- derstanding of death; answering all questions, avoid- ing unnecessary or unwarranted information; and sharing personal feelings of grief, which demon- strates that sadness, tears, anger, disbelief, and guilt are acceptable (Ethier, in press). Comfort care meas- ures are provided to enhance the child’s sense of se- curity and include distraction techniques (such as music, video games, movies, books), pets, familiar toys, therapeutic touch or massage, and visits from friends and family members.

Table 30.3. Warning signs of complicated grief Absence of grief

Persistent blame or guilt

Aggressive, antisocial, or destructive acts Suicidal thoughts or actions

Unwillingness to speak about the deceased

or expression of only positive or only negative feelings about the deceased

Prolonged dysfunction in school/work Exhibiting proneness to accidents

Engaging in addictive behaviors (e.g., drugs, food)

Adapted from N Kline (ed) (in press) Essentials of pediatric oncology nursing: a core curriculum, 2nd edn. Association of Pediatric Oncology Nurses, Glenview, IL. Copyright by the Association of Pediatric Oncology Nurses

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Table 30.4. Grief interventions for children

Age 0–3 Maintain routines but allow for flexibility Choose familiar and supportive caregivers

Assign a support person for each child during funeral, burial, and other rituals

Acknowledge all feelings of child and adult by naming feelings and giving permission to express anger and sadness in developmentally appropriate ways

Give hugs when needed to help child feel secure

Age 3–5 Reinforce that when people are sad, they cry; crying is natural

Read stories

Provide materials for child to draw pictures Encourage dialogue among family meetings

Expect misbehavior as child struggles with confusing feelings Offer play with themes of death while providing supportive guidance

Preschool and school-age kids may benefit from knowing that the person is no longer breathing, unable to talk or other physical indicators that person is not alive

Age 6–9 Listen to determine what information the child is seeking

Increase physical activity while role-modeling stress-reducing behaviors Work on identifying more sophisticated feelings (i.e., frustration, confusion) Encourage creative outlets for feelings (i.e., drawing, painting, clay, blank books)

Preschool and school-age kids may benefit from knowing that the person is no longer breathing, unable to talk, or other physical indicators that person is not alive

Age 10–12 Encourage creative expressions of feelings

Explore support group/peer-to-peer connection Establish family traditions and memorials

Incorporate children into rituals, not just at time of death, but at important anniversaries

(e.g., taking balloons to the cemetery; creating a special Christmas tree ornament which is always hung first; having birthday dinners and memory nights)

Adolescents Allow for informed participation

Encourage peer support

Suggest individualized and group expressions of grief Recommend creative outlets, (i.e., writing, art, and music)

From Hellsten MB, Hockenberry-Eaton M, Lamb D, Kline N, Bottomley S (2000) End-of-life care for children. Texas Cancer Coun- cil, Austin, TX, pp. 68–69. Copyright 2000 by the Texas Cancer Council. Reprinted with permission

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30.5 Cultural and Spiritual Care 30.5.1 Principles

Culture is a system of socially-acquired beliefs, val- ues, and rules of conduct for a particular group (Hell- sten et al., 2000). Race is only one aspect of an indi- vidual’s culture. Culture is multifaceted (Table 30.6), frequently changes, and is often transmitted uncon- sciously (American Association of Colleges of Nurs- ing and City of Hope National Medical Center, 2003).

Spirituality involves finding the meaning of one’s life, connecting with a higher power or others, and

developing the ability to live with uncertainty (Mazanec and Tyler, 2003). Spirituality may or may not involve participation in organized religion.

30.5.2 Assessment of Child and Family

Components of cultural and spiritual assessment (Table 30.7) include identifying the child and family’s beliefs, concerns, wishes related to their culture, and wishes related to their religious, spiritual, or existen- tial issues.

30.5.3 Interventions

Providing culturally competent care includes being flexible, displaying empathy, portraying a nonjudg- mental approach, and facilitating communication (American Association of Colleges of Nursing and City of Hope National Medical Center, 2003). Cultur- al sensitivity involves knowledge, attitudes, attrib- utes, and skills (American Association of Colleges of Nursing and City of Hope National Medical Center, 2003).

Communication with the child and family who speak a different language from the nurse should in- volve an interpreter (Table 30.8). If possible, family members should not be used as translators for the child. Conversational style, personal space, eye con- tact, touch, time orientation, view of healthcare providers, and auditory versus visual learning styles should be considered when communicating with the child and family (American Association of Colleges of Nursing and City of Hope National Medical Center, 2003). Respect should be shown for the child and family’s cultural and spiritual beliefs and traditions.

Table 30.5. Grief interventions for parents and siblings

Parents should be Siblings should be

Encouraged to spend time with all of their children Informed about dying sibling’s situation Encouraged to maintain normal activities Allowed to talk and ask questions

Encouraged to take time for themselves Comforted and supported regardless of expressions Encouraged to share their feelings with spouse/significant other Involved in activities with dying sibling

Encouraged to seek respite care as needed Encouraged to see and say good-bye after sibling dies Encouraged to attend funeral or memorial services

Table 30.6. Components within culture Ethnic identity

Gender Age

Differing abilities Sexual orientation Religion and spirituality Financial status Place of residency Child’s role Educational level

Adapted from American Association of Colleges of Nursing and City of Hope National Medical Center (2003) ELNEC/End- of-Life Nursing Education Consortium/Pediatric Palliative Care Faculty Guide, pp. M5-5–M5-7. Copyright 2003 by the Ameri- can Association of Colleges of Nursing and City of Hope National Medical Center

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30.6 Bereavement 30.6.1 Principles

Bereavement is the state of having suffered a loss. The death of a child is frequently viewed as out of the nor- mal order. Experiencing the death of a child is one of the most difficult losses (Field and Behrman, 2003), and it affects the entire family. The stages of bereave- ment include shock and disbelief, experience of grief, disorganization and despair, and reorganization (Ethier, in press). The tasks of bereavement include acknowledging and accepting the loss, experiencing pain, and adjusting to life without the child (Ethier, in press). The nurse’s role includes facilitating the griev- ing process (Table 30.9).

Table 30.7. Components of cultural and religious assessment How does the child identify him/herself?

Where were the child and family/caregivers born?

If immigrants, how long have they lived in this country?

How old were they when they came to this country?

Where were their grandparents born?

What is the child and family’s ethnic affiliation and how strong is the ethnic identity?

Who are the child’s and family’s major support people:

family members, friends? Does the patient live in an ethnic community?

How does the child and family’s culture affect decisions regarding their medical treatment? Who makes decisions? What are the gender issues in the child’s culture and in their family structure? Is the decision- making a shared responsibility?

What are the primary and secondary languages, speaking and reading ability, and educational level?

How would you characterize the nonverbal communi- cation styles of the child and family?

What is their religion, its importance in daily life, and current practices? Is religion an important source of support and comfort? What are other aspects of spirituality?

What are the food preferences and prohibitions?

What is the economic situation, and is the income adequate to meet the needs of the child and family?

What healthcare coverage is available?

What are the health and illness beliefs and practices?

What are the customs and beliefs around the transitions of illness and death? What are their past experiences regarding death and bereavement? How much do the child and family wish to know about the disease and prognosis? What are their beliefs about the afterlife and miracles? What are their beliefs about hope?

What are their beliefs about pain and suffering?

Adapted from American Association of Colleges of Nursing and City of Hope National Medical Center (2003) ELNEC/End- of-Life Nursing Education Consortium/Pediatric Palliative Care Faculty Guide, pp. M5-8–M5-9. Copyright 2003 by the Ameri- can Association of Colleges of Nursing and City of Hope National Medical Center

Table 30.8. Communicating with the use of translators Assess the translator’s comfort with the topic to be discussed before the conversation

Explain the purpose of the meeting to the translator Ask the translator to meet with the child and family before the discussion to establish trust

Speak to the child and family, not the interpreter, using simple language and avoiding medical jargon, pausing between sentences to allow the interpreter to translate every word

Ask the child and family to repeat what you’ve discussed to verify comprehension

Encourage the same translator to continue working with the same family throughout care

Adapted from American Association of Colleges of Nursing and City of Hope National Medical Center (2003) ELNEC/End- of-Life Nursing Education Consortium/Pediatric Palliative Care Faculty Guide,p.M5-10.Copyright 2003 by the American Asso- ciation of Colleges of Nursing and City of Hope National Med- ical Center

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30.6.2 Assessment of Child and Family

The grief assessment (Tables 30.2 and 30.3) should include the family members and significant others and should take place several times during the be- reavement period (American Association of Colleges of Nursing and City of Hope National Medical Center, 2003). Cultural and spiritual beliefs should be consid- ered for each individual because these may affect the grief process.

30.6.3 Interventions

Interventions at the time of death include allowing the parents and siblings to participate, if desired, in preparing the child’s body; supporting the family’s cultural and spiritual preferences; and assisting with notification of the child’s death and with any funeral or memorial arrangements, if requested (Hellsten et al., 2000). Facilitating bereavement (Table 30.9) as- sists family members through the grief process. Help- ing the family to find healthy ways to remember the child may include storytelling, developing rituals, and creating a memory book. Family members should be referred to other healthcare providers (so- cial workers, psychologists, psychiatrists, counselors, marriage and family therapists, pastoral counselors, and school-based guidance counselors) as indicated.

Complicated grief symptoms may necessitate referral

to a mental healthcare provider. Suicidal thoughts or actions and expressions to inflict hurt on another re- quire immediate professional care (Hellsten et al., 2000). Many believe that the process of grieving is never fully completed (American Association of Col- leges of Nursing and City of Hope National Medical Center, 2003).

30.7 Resources

30.7.1 Resources for Children Preschool to age 8

Baumgart Klaus (2000) Laura’s Star. Little Tiger Press, London.

Hickman M (1984) Last week my brother Anthony died. Abingdon Press, Nashville, TN

Lawrence M (1987) For everyone I love. Children’s Hospice International, Alexandria, VA

Mellonie B, Ingpen R (1983) Lifetimes. Bantam Books, New York

Smith Joy (2004) The Day Great grandma moved house: a story explaining death and bereave- ment to young children. Kevin Mayhew.

Stickney D (2002) Waterbugs and Dragonflies.

Continuum International Publishing Group, Academi.

Varley Susan (1997) Badger’s parting gifts.

HarperCollins, London.

Williams M (1971) The velveteen rabbit. Double- day, Garden City, NY

Ages 8 to 11

Buck P (1947) The big wave. John Day, New York Buscaglia L (1982) The fall of Freddie the leaf. Holt,

Rinehart and Winston, New York

Center for Attitudinal Healing (1979) There is a rainbow behind every dark cloud. Celestial Arts, Berkeley, CA

Coutant H (1974) First snow. Knopf, New York Krasny Brown L & Brown M (1996) When dino-

saurs die: a guide to understanding death. Time Warner Trade Publishing, New York.

Varley Susan (1997 ) Badger’s parting gifts.

HarperCollins, London.

(Or younger age group).

Table 30.9. Facilitating bereavement Allow children and adults who are grieving to complete process, which includes these steps:

1. Tell story of their loved one 2. Identify and express emotion

3. Find meaning from experience and loss 4. Make transition from their relationship with the

physical presence of the deceased child/sibling to development of a relationship based on the history, memories, and the notion of who the child/sibling would have been

Adapted from Hockenberry-Eaton MJ (ed) (1998) Essentials of pediatric oncology nursing: a core curriculum. Association of Pediatric Oncology Nurses, Glenview, IL, p. 230. Copyright 1998 by the Association of Pediatric Oncology Nurses

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White EB (1952) Charlotte’s web. Harper & Row, New York

Ages 12 and Up

Agee J (1959) A death in the family.Avon, New York Coerr E (1977) Sadako and the thousand paper

cranes. Putnam, New York

Craven M (1973) I heard the owl call my name.

Doubleday, Garden City, NY

Grollman S (1988) Shira: a legacy of courage. Dou- bleday, New York

Klein N (1974) Sunshine. Avon, New York

Rofes E (1985) The kids’ book about death and dying. Little, Brown, Boston

30.7.2 Resources for Adults Books

Buckman R (1996) “I don’t know what to say...”:

how to help and support someone who is dying, 2nd edn. Key Porter Books, Toronto

Farrant A (1998) Sibling Bereavement: Helping children cope with loss. Continuum Interna- tional Publishing Group, Academi.

Fitzgerald H (1992) The grieving child: a parent’s guide. Simon & Schuster, New York

Grollman EA (1990) Talking about death to chil- dren: a dialogue between parent and child.

Beacon Press, Boston

Kübler-Ross E (1983) On children and death: how children and their parents can and do cope with death. Simon & Schuster, New York

Phillips Kerstin (1996) What do we tell the chil- dren?: Books to use with children affected by illness and bereavement. Barnardo’s, London.

Organizations

Center for Loss and Grief Therapy, 10400 Connecticut Avenue, Suite 514, Kensington, MD 20985, USA (+1-301-942-6440)

Children’s Hospice International, 2202 Mt. Vernon Avenue, Suite 3C, Alexandria, VA 22301, USA

(+1-800-703-684-0300; www.chionline.org)

Christian Lewis Trust, Cancer Care for Children Tel.: (01792) 480500 Fax (01792) 480700 (http://www.childrens-cancer-care.org.uk/) CLIC (Cancer and Leukaemia in Childhood)

Head office, Abbey Wood Business Park Filton, Bristol, BS34 7JU; Tel.: 0845 301 0031

Email: info@clic.org.uk (http://www.clic.uk.com/)

The Candelighter’s Childhood Cancer Foundation, 7910 Woodmont Avenue, Suite 240, Bethesda, MD 20814, USA (+1-800-366-2223; www.candlelighters.org) Web sites

Children’s Cancer Web:

http://www.cancerindex.org/ccw/

End-of-Life Care for Children:

www.childendoflifecare.org Last Acts: www.lastacts.org Macmillan Cancer Relief:

http://www.cancerlink.org

References

American Association of Colleges of Nursing and City of Hope National Medical Center (2003) ELNEC/End-of-Life Nurs- ing Education Consortium/Pediatric Palliative Care Facul- ty Guide

Buckman R (1996) “I don’t know what to say...”: how to help and support someone who is dying, 2nd edn. Key Porter Books, Toronto

Ethier AM (in press) Children and death. In N Kline (ed) Es- sentials of pediatric oncology nursing: a core curriculum, 2nd edn. Association of Pediatric Oncology Nurses, Glen- view, IL

Ferrell BR, Coyle N (2002) An overview of palliative nursing care. American Journal of Nursing 102(5):26–31

Field MJ, Behrman RE (eds) (2003) When children die: im- proving palliative care for children and their families. Na- tional Academies Press, Washington, D.C.

Fochtman D (2002) Palliative care. In: Baggott CR, Kelly KP, Fochtman D, Foley GV (eds) Nursing care of children and adolescents with cancer, 3rd edn. Saunders, Philadelphia, pp. 400–425

Grollman EA (1990) Talking about death to children: a dia- logue between parent and child. Beacon Press, Boston Hellsten MB, Hockenberry-Eaton M, Lamb D, Kline N, Bot-

tomley S (2000) End-of-life care for children. Texas Cancer Council, Austin, TX

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