Download pdf - Children Coping With A Parents Terminal Illness

DOI: 10.3322/canjclin.56.4.197 2006;56;197-212 CA Cancer J Clin

Grace H. Christ and Adolph E. Christ Current Approaches to Helping Children Cope with a Parent’s Terminal Illness

This information is current as of January 21, 2010

http://caonline.amcancersoc.org/cgi/content/full/56/4/197located on the World Wide Web at:

The online version of this article, along with updated information and services, is

http://caonline.amcancersoc.org/subscriptions/individuals only): , go to (USCA: A Cancer Journal for CliniciansTo subscribe to the print issue of

Print ISSN: 0007-9235. Online ISSN: 1542-4863. Williams Street NW, Atlanta GA 30303. (©American Cancer Society, Inc.) All rights reserved.

is owned, published, and trademarked by the American Cancer Society, 250CANovember 1950. Society by Wiley-Blackwell. A bimonthly publication, it has been published continuously since

is published six times per year for the American CancerCA: A Cancer Journal for Clinicians

by on January 21, 2010 (©A

merican C

ancer Society, Inc.)

caonline.amcancersoc.org

Dow

nloaded from

http://caonline.amcancersoc.org/cgi/content/full/56/4/197

http://caonline.amcancersoc.org/subscriptions/

http://caonline.amcancersoc.org:80

Current Approaches to HelpingChildren Cope with a Parent’sTerminal Illness1

Grace H. Christ, MSW, DSW; Adolph E. Christ, MD, DMS

ABSTRACT Much has been learned about childhood bereavement in the last few decades as

studies have increasingly focused on the direct interviewing of children about their recovery from

the tragic loss of a parent. It has been shown that children do indeed mourn, although differently

from adults. Important moderating and mediating variables have been identified that impact

their recovery from the loss of a parent, which can be the focus of intervention. When death is

expected, the terminal phase of an illness has been found to be particularly stressful for children,

yet seldom investigated. Similarly, few studies have explored the impact of development on

children’s experience and expression of grief. We present research findings that clarify phases

in children’s experience during the terminal illness, hospital visits, the death, and its immediate

aftermath, as well as how the parent is mourned and issues in longer term reconstitution. Variations in children’s responses in these

phases are described as they were experienced by 87 children from 3 different developmental groupings: 3 to 5 years, 6 to 8 years,

and 9 to 11 years. Recommendations are suggested for parents and professionals about ways to understand and support children

during the terminal illness, at the time of death, and during the phase of reconstitution. (CA Cancer J Clin 2006;56:197–212.)

© American Cancer Society, Inc., 2006.

INTRODUCTION

For a child, the death of a parent is a highly stressful event. Research suggests that it places them at risk for adversepsychosocial consequences. However, with adequate family resources, competent substitute care, and emotionalsupport, bereaved children are better able to return to previous levels of functioning.1–4 When death can beanticipated, as with a terminal illness, physicians and other health care professionals have an opportunity to amelioratethe impact of the loss. The experiences of adolescents who confront parent loss from illness and the ways professionalscan support their coping were reviewed in an earlier article.5 Presented here is an update on current approaches tohelping children (age 3 to 5, 6 to 8, and 9 to 11) cope with a parent’s terminal cancer illness and death. Theseapproaches are informed by three areas of research:Y Risk and protective factors that mediate the coping of bereaved children.Y Intervention during the terminal illness.Y Developmental grouping of children to enhance specificity and accuracy of findings and interventions.

Suggested are ways to better prepare families and health care professionals to facilitate children’s mastery ofadaptive tasks during the terminal phase of the parent’s illness, at the death, and during its immediate aftermath.

1This work was supported in part by grants from the National Institute of Mental Health (NIMH) (MH41967), the American Cancer Society (PRB-24A), thevan Ameringen Foundation, the Society of Memorial Sloan-Kettering Cancer Center, and the Project on Death in America of the Open Society Institute.

Dr. G. Christ is Associate Profes-sor, Columbia University School ofSocial Work, New York, NY.

Dr. A. Christ is Professor Emeritus,Child/Adolescent Psychiatry SUNYHealth Science Center at Brooklynand Kings County Hospital, Brook-lyn, NY.

This article is available online athttp://CAonline.AmCancerSoc.org

CA Cancer J Clin 2006;56:197–212

Volume 56 Y Number 4 Y July/August 2006 197


merican C



Dow

nloaded from


BACKGROUND

Early research in childhood bereavementhypothesized links between unresolved child-hood grief and subsequent adult psychopathol-ogy.6–8 While early studies appeared toestablish a link,9,10 later research was able tocontrol for independent, moderating, and me-diating variables associated with outcomes thatsuggested child bereavement alone was un-likely to be related to adult psychopathology.11

Rather, these studies highlighted the impor-tance of mediating and moderating factors as-sociated with bereavement, such as the qualityof parental care and the presence of other ad-verse social and psychological occurrences pre-ceding and following the bereavement thatmay have more influence on adult outcomesthan the fact of the death.12

Studies conducted shortly after parent death,including interviews with children, have con-firmed that children do indeed experiencegrief, sadness, and despair following the deathof a parent. As Dowdney states in her review ofchild bereavement research, “Inconsistencies inthe literature relate to rates of disorder or dis-turbance rather than to the manner in whichchildren manifest distress.”8 The highest ratesof psychological symptoms are found in sam-ples that include children referred for bereave-ment services or those from less stablebackgrounds or under-resourced family envi-ronments.8,13,14 In adequately resourced andstable family situations, those with clinical levelsymptoms extending beyond 1 year after thedeath of a parent are about 20%. For example,Lin reported that 40% of bereaved children hadclinical symptom levels in a sample of childrenwhose families were seeking bereavement ser-vices and who were subsequently entered intoa parent-child skills training program.4 By con-trast, the Harvard Bereavement Study reportedonly 19% of their publicly recruited sample ofbereaved children had clinical symptom levelson the same measure at approximately the sametime since the parent’s death.13 These studiesdo not include longer-term outcomes. Onestudy reported an elevation of symptoms 2years after the parent’s death, suggesting thepossibility of later consequences.13

Recent studies have also identified a broadrange of risk and protective factors that con-tinue to be explored, refined, and utilized indeveloping interventions and service programs.Those currently under study are summarized inTable 1. Prospective and retrospective studiesconfirm the critical role of the surviving parentor caregiver in helping children adapt to aparent’s death. The quality of the relationshipwith the surviving parent or caregiver and theircompetence in parenting bereaved children arethe most consistently identified mediating vari-ables.3,15–20 Caregiver attributes that contrib-ute to children’s adaptation include more activecoping, less depression, more parental warmth,and family cohesiveness.4,20 While the connec-tion between children’s mourning experienceand adaptation level has not been clearly doc-umented, better psychological outcomes havebeen associated with broader characteristics, in-cluding openness of general communicationwith the surviving parent and sharing of infor-mation about the parent’s death.21,22 Parentsoften find it difficult to understand and respondto their children’s unique, developmentallyspecific expressions of grief, which may seemvague, intermittent, and at times inappropriateby adult standards. Adults find that children caneven appear to be unconcerned, callous, orindifferent.

Helping Children Cope During the Parent’sTerminal Illness

The surviving parent’s management of theterminal illness experience and preparation oftheir children for the death are viewed in theclinical literature as important mediators ofchildren’s bereavement, yet there has been littleinvestigation of the children’s coping duringthis time period. Siegel reports that children(age 7 to 17) whose parents were in the termi-nal stages of illness displayed significantlyhigher levels of depression and anxiety thancommunity controls.23 At follow up, between7 and 12 months after parental death, differ-ences between the groups had become nonsig-nificant.3 These findings suggest that whenparental death follows a lengthy terminal ill-ness, child disturbance may precede the death

Helping Children Cope with a Parent’s Terminal Illness

198 CA A Cancer Journal for Clinicians


merican C



Dow

nloaded from


itself. Indeed, for children it may be the time ofhighest distress. Other recent retrospectivestudies of bereaved children continue to doc-ument misunderstandings and guilt surround-ing the parent’s deteriorating condition andterminal illness.24,25 These studies also reportedbereaved children’s memories of anxiety anddisappointment when visiting and interactingwith the ill parent, memories that remainedpainful and disturbing during the first yearsafter the death.

Few interventions have been developed toaddress these stresses and parenting challenges.Only one intervention studied focused onhelping surviving parents achieve effectivecommunication with their children about thepatient’s impending death, including mediatingsuccessful visits when the patient was in thehospital.26 Newer medical treatments have ex-tended the terminal illness period for manycancer patients so that it may now includeperiods of disease exacerbation and aggressivetreatment, alternating with periods of reducedsymptoms and disease control when life canproceed more normally. This gives familiesmuch needed hope, but also creates new adap-tive challenges. Determining prognosis, that is,when death is imminent is increasingly diffi-cult.27 Both parents and physicians must findnew ways to communicate about the illness,explaining what children see and hear and pre-paring them for difficult times, but also reas-suring them of the parent’s well-being whentheir condition is stable or has improved and

encouraging adaptive denial to permit qualitytime together while symptoms are reduced.

Many parents strive to limit the adverse im-pact of the loss on their children’s future de-velopment and frequently request guidancefrom physicians about how best to communi-cate with their children during the parent’sterminal illness.3,24,28,29 Children and adoles-cents report that they value open communica-tion with both parents about the illness anddeath, and research suggests that it helps themduring their bereavement.21,26 Younger chil-dren are less likely than adolescents to receiveinformation about their parent’s terminal con-dition before the death.22 This is thought tooccur because young children have less accessto adult information, their more limited cog-nitive abilities make it difficult to explain thesituation to them, and adults, often incorrectly,believe they are protecting them from theemotional pain of loss by not discussing it withthem ahead of time. As a consequence, chil-dren’s particular questions and needs duringtheir parent’s terminal illness are less under-stood.

Age-specific Information

When death is imminent, physicians andother health professionals can help prepare par-ents by providing specific, concrete informa-tion and practical advice to facilitate coping andmeeting children’s needs at this very stressfultime in the family’s life. Unfortunately, re-

TABLE 1 Risk Factors Impeding and Protective Factors Promoting Reconstitution

Risk Factors Impeding Reconstitution

Concurrent stressful life eventsA negative or non-supportive relationship with the surviving caregiverA poor relationship with the parent who diedLow self-esteem and an external locus of controlPreexisting mental health problems in the adolescent or the surviving parent or caregiverCircumstances of the death, such as violent or traumatic death

Protective Factors Promoting Reconstitution

Having a relationship with surviving parent or caregiver characterized by open communication, warmth, and positive experiencesSurviving parent able to sustain parenting competenceFeeling accepted by peers and other adults, such as relatives and teachersHigher socioeconomic statusInternal locus of control, religiousnessIntellectual and social competenceThe opportunity to express thoughts and feelings about the deceased parent and have them validated by others




merican C



Dow

nloaded from


search on developmentally specific responses,although requested by parents, has been lim-ited. While clinical case studies have reporteddifferent cognitive and emotional responses ofpreschoolers, school-age children, and adoles-cents, no differences in disturbance by age havebeen established.8,30 A study of bereaved 3- to5-year-old children found that, contrary to theguilt generally described in older children’sgrief, children this age experienced no feelingsof causal responsibility.31 Rather they are re-ported to show separation anxiety, depen-dency, nighttime fears, regressive behaviors,irritability, and impatience.32,33 Another age-specific study focused on bereaved adolescents.Adolescents younger than 15 years old at thetime of the parent’s death were found to bemore vulnerable to depression than those 15 to19 years of age.34,35 Other clinical literature hasattempted to clarify the grief process duringadolescence, but the specific effects of parentaldeath on the mental health of this age grouphave remained largely unexplored.

NEW DIRECTIONS

Three National Institute of Mental Health(NIMH)-supported studies addressed child be-reavement issues using prospective rather thanretrospective designs.2,13,36 Two programsstudied families following the death of a parentto provide generalizable information about theresponse and recovery processes of expectedand unexpected deaths, including those fromaccident, suicide, and homicide. Worden’sHarvard Child Bereavement Study yielded im-portant insights about the recovery processesreviewed above. Children and adolescentswere more symptomatic at the second thanafter the first anniversary of the parent’sdeath.13,37 Sandler provided a carefully con-trolled parent and child skills training interven-tion. Families were recruited from thoseseeking preventive bereavement services, andthese distressed families improved following aseries of 12 group sessions.2

The Memorial Sloan-Kettering CancerCenter study (MSKCC) compared 2 interven-tions (a parent-guidance and a telephone sup-

portive intervention) conducted with familiesbeginning 3 to 6 months before the patientdied and continuing for 14 months after deathfrom cancer.26 Families with children who hada serious preexisting emotional problem wereexcluded. This more homogeneous populationmade it possible to group children with similarcognitive, emotional, and sociocultural devel-opmental attributes.1 As presented below, thisgrouping clarified clinically important differ-ences in their responses to the illness and deathof a parent. The exclusion of unpredictabledeaths also made it possible to understand theimpact of the highly stressful reactions to theterminal illness and the value of providing in-terventions during this critical stage.

A qualitative analysis was used with the in-tervention interviews of 157 children from 88families. Five different developmental group-ings were identified: 3 to 5 years, 6 to 8 years,9 to 11 years, 12 to 14 years, and 15 to 17years.1,26 The categories were formed bygrouping children who evidenced similar de-velopmental attributes. The parent-guidanceintervention focused on family communicationabout the illness, parental competence withtheir bereaved children, and promoting consis-tency in management of family decision mak-ing and direction.36 Information was alsoobtained from parent and child assessments be-fore and after the parent’s death. The findingsdescribe children’s experiences and related in-terventions at three different time periods: (1)when the patient was believed to have a lifeexpectancy of at least 6 months;38 (2) at thetime of the patient’s death; and (3) during theimmediate bereavement period.

DEVELOPMENTAL VARIATIONS IN CHILDREN’SRESPONSES TO A PARENT’S TERMINAL ILLNESS

Sample

The sample in the MSKCC study includedboth children and adolescents. The findingspresented here were drawn from the 87 3- to11-year-old children whose families partici-pated in the parent-guidance intervention.There were 11 girls and 7 boys in the 3- to




merican C



Dow

nloaded from


5-year-old group; 16 girls and 16 boys in the 6-to 8-year-old group, and 18 girls and 19 boys inthe 9- to 11-year-old group.

THREE- TO FIVE-YEAR-OLD CHILDREN: “WHERE DIDHE GO?”

Key Developmental Characteristics

Y Early preoperational thinking39 makes it dif-ficult for them to understand the meaning ofthe illness and the permanence of death.

Y They can repeat a memorized script thatexplains the situation, but without under-standing it.

Y Communication is mostly through play andfantasy.

Y Limited language skills make it hard forcaregivers to comprehend young children’sbehaviors and moods.

Y Their world consists almost exclusively offamily centered around the home and theirrelationship to the primary caregiver(s).

Y Separation from a primary caregiver is theirgreatest source of stress. Even very youngchildren can experience night terrors andother more obvious distress responses relatedto the sudden and frequent removal of aprimary caregiver.

Y Fortunately, children this age can acceptcompetent substitute caregivers, especially ifprepared for the possibility of unexpectedsubstitutions.

Y Young children can become distressed bythe primary caregiver’s outbursts of grief,their inability to mute or filter strong reac-tions, or their emotional withdrawal fromillness or exhaustion.

Intervention during the Parent’s Terminal Illness

Three- to five-year-old children can observethe parent’s loss of strength and function, suchas the inability to lift them. “Daddy can’t takecare of me anymore,” said a 3-year-old whoobserved her father’s difficulty with ambula-tion. They begin to understand that somethingis wrong, but cannot comprehend the perma-nence of death. If the parent discusses it withthem, they might say the words, but with lim-

ited understanding. Nevertheless, it is oftenhelpful for parents to give children a script, anexplanation of events that they more fully graspas they mature.

A 7-year-old said of her 4-year-old sister,“Before my mother died, my sister wanted totalk about her death, because she thought it waslike an exciting thing. She thought she wouldcome back. Now she’s mad because she didn’tcome back.”

Another 7-year-old described her 4-year-old sister’s reaction: “The night Daddy died,she and Mummy came to my bed. Mummysaid, ‘Your father died,’ and my sister waslaughing because she thought something excit-ing had happened. She didn’t know what deadmeans. It was very sad; Mummy cried until thepriest came, then my sister cried too.” Themother added, “She cried because I cried.”

During a father’s terminal illness, one4-year-old expressed her anxiety about his ob-vious frailty by describing her new imaginarycompanions, brothers and sisters who becameill and died and were immediately replacedwith new “bigger and stronger brothers” whowatched over her and took care of her. Thisplay lasted several weeks and was graduallyelaborated as her father’s illness progressed. Itseemed to reflect her anxiety about his symp-toms, the well parent’s distress, and her beliefand wish that the father would return and beable to take care of her again.

It is important with children this age tolocate a competent substitute caregiver whennecessary and repetitively reassure children thatthey are loved and will be taken care of.

Planning Hospital Visits

Some parents misunderstand “open com-munication” to mean the full expression oftheir intense grief with young children. One3-year-old developed a fear of entering herfather’s hospital room because her young par-ents tended to cry together when she was there.The mother was referred to a social workerwho helped her structure the visits, control herstrong emotions, limit the time of the visits,and bring things for the daughter to do withher father. The child’s fears decreased and the




merican C



Dow

nloaded from


visits were often pleasurable. If the parent is inthe hospital for an extended period of time,young children can be relieved to see them,however briefly.

At times, parents resist having their youngchild see them in a debilitated state. If theparent, child, and hospital staff were prepared,the visit structured, and the patient’s conditionexplained by staff, the visit was positive, andthe patient was not remembered in a negativeway.1 Children generally develop positivememories and images of the parent shortly afterthe death. At times a parent resists contactwhen in a debilitated state because they do notwant to risk infection by handling a child orthey have no energy to cope with a child’semotion and developmentally appropriatephysical demands. These situations must be ex-plained to children to counter their feeling thatthey are being rejected because they are bad.The patient’s vulnerability must also be re-spected. Alternative modes of communication(eg, telephone, note cards, or gifts) can behelpful.

The Death and Its Immediate Aftermath

When death occurs, children in this agerange require concrete descriptions of whathappens to people when they die—loss offunctions, permanence of the death, as well assadness and other emotions people feel after thedeath. When told of the parent’s death, chil-dren this age are often befuddled, wonderingwhere the parent has gone. Repetitive ques-tioning about where the parent has gone ischaracteristic for weeks and months after thedeath. Although such questioning helps chil-dren this age develop a sense of mastery, it canevoke overwhelming emotions in the grieving,surviving parent. Having children participate inbereavement play groups or talk with anotheradult about the parent who died, like aunts oruncles of the deceased parent, especially tellingstories about the parent, can provide opportu-nities to support the child and at the same timerelieve the grieving parent. Children this ageoften enjoy bereavement groups, relevant arttherapy, or other expressive sessions after deathhas occurred. Many children also want to place

things in the coffin with the parent (eg, stuffedanimals, pillows, pictures of the parent, or toysthe child especially likes).

As children this age experience the parentnot returning day after day, they may becomeincreasingly angry and distraught over time.Older siblings can become impatient with hav-ing to answer their demanding questions.

One 4-year-old girl became whiny andclingy after her father died. Occasionally, shesat in his chair with many blankets wrappedaround her. When she began complaining ofstomach aches, her mother took her to thedoctor, and she promptly asked him when shecould see her father again. Three months later,she was able to say, “Daddy died.”

How the Parent is Remembered

The children’s memories of the deceasedparent were generally positive soon after thedeath, focusing on pleasurable experiences,caretaking, and protective functions. Manyloved to hear stories about the deceased parent.One 4-year-old enjoyed when her sister madetheir father’s favorite pancakes using his “se-cret” recipe or when they carefully tendedDaddy’s garden. Another 4-year-old recalledthat his father had tickled him; another talkedwith pleasure about how his father had tossedhim up in the air. Recapturing such experi-ences seemed to comfort them. However, aftersome time, most children this age requestedthat the surviving parent find a replacement.Young children wanted a whole family, likethe other children in their preschools had.

One 5-year-old said, “Next time, get twodaddies, so if you lose one again.”

The Course of Recovery: Issues in Reconstitution

One mother explained that her 4-year-oldson was not mourning. Rather, he seemed veryhappy because she was now home much moreregularly than she had been during his father’sterminal illness. The central focus of childrenthis age on the primary caregiver meant thattheir consistent and predictable presence wasessential. The primary caregiver often neededto function as a “Rosetta Stone,” helping to




merican C



Dow

nloaded from


interpret the child’s behaviors and affects toothers, as well as to the child.

SIX- TO EIGHT-YEAR-OLD CHILDREN: “I THINK IKILLED HER”

Key Developmental Characteristics

Y Late preoperational thinking39 includes bothmagical and logical thinking.

Y Children understand the parent will not re-turn and death is universal (it could happento me).

Y Children may be highly emotional and havedifficulty containing emotions.

Y They blame themselves when bad thingshappen.

Y They may make logical errors, misunder-standing cause and effect.

Y They can show fear that aggressive thoughts,words, or wishes can be harmful.

Y “I prayed my mother would be out of painthe night before she died. I think I killedher,” said a 7-year-old girl.

Y They cannot retrace thinking to origins oferror to correct erroneous ideas.

Y Parental support of self-esteem is stillneeded, but now they are also aided bypraise of teachers.

Y Although parents are a primary source ofself-esteem, they fear rejection by peers.

Y A 7-year-old girl cried because a classmatesaid, “You can’t go to the father-daughterdance because your daddy is dead!”

Y Language skills are more advanced.


Three types of information are helpful to 6-to 8-year-old children during the parent’s ter-minal illness: (1) simple, concrete, definitional,disease-related information, such as the nameof the disease, its progress, symptoms, treat-ments and causes; (2) simple explanation of thecausal relationship between the patient’s be-havior and appearance and the symptoms andtreatment of the disease; and (3) when death isimminent, the prognosis. These children maywell overhear conversations that include thisinformation. One 8-year-old boy developed

elaborate eavesdropping methods, picking upextension phones, and listening through closetwalls. However, we observed that if parentsspoke candidly and explained major changesdirectly, children then felt free to ask questions,and misunderstandings could be clarified.

In this age range, children’s awareness oftheir parent’s death can be quite varied. Manyspoke openly about being afraid their parentwould die, even when their parents had previ-ously told clinicians they thought their children“had no idea” about the parent’s diagnosis anddid not understand about their imminentdeath. Other children, though aware of theillness, were unaware of the terminal nature ofthe current episode. A few were unclear aboutthe diagnosis and therefore were confusedabout what was happening to the parent. Mosthad “anticipatory anxiety” rather than antici-patory grief as experienced by adolescents andadults. They sensed something “catastrophic”was going to happen, and they wondered ifthey or their family would survive it.

An 8-year-old boy whose father was termi-nally ill said, “I began to think maybe Grandmaand Grandpa would die, my mom would alsodie, and maybe the whole world would end,and nothing would be there.”

These children tend to be highly emotionaland reactive to the many changes taking placein the family as a consequence of the parent’sillness. Indeed, this seems the most difficult agefor parents to manage during the predeath pe-riod, even though existing research has notnecessarily identified them to be at higher riskover the long term. They are upset by bothparents’ preoccupation with the ill patient’scondition and their difficulty in listening to thechild or playing with them. They react to sep-arations and to changes in their own activities.They react to the parents’ increased tension,anger, and depression, and to the lack of hap-piness, joy, and celebrations in the home. Ex-planation of what is happening, even if thechild does not ask, is often helpful and can givepermission for the child to ask more questions.

Children this age find it difficult to “reverse”their thinking once they develop an erroneousidea. Therefore, even when parents explain thepatient’s withdrawal is not from a lack of love




merican C



Dow

nloaded from


and that the illness causes these changes, theymay remain angry and upset for some time andrequire much repetition. These children arealso “truth tellers” or “whistle blowers” andwill readily express emotions and situationstheir older siblings have learned to hide ordisguise.

One 7-year-old girl whose father was termi-nally ill with a brain tumor described thechanges in their family. “Mom and Dad used togo dancing. They don’t do that any more, andMom is angry all the time. Dad won’t let me siton his lap. I don’t think he loves me anymore.”

Parents often find it useful to enlist the helpof other adults or professionals to listen to theirchildren’s distress. The parent’s own emotionalstate as the patient’s death approaches or in thepostdeath period may limit their capacity toattend in a helpful way.


Although the 6- to 8-year-olds do not needthe parent’s constant presence, as do 3- to5-year-olds, they do need the parent to be asconsistent as possible with them. For example,this includes letting them know about the pos-sibility of emergency trips to the hospital andpreparing them for how the situation will behandled and who will take care of them whenboth parents are absent. If separations are notprolonged, and they are aware of the parents’whereabouts, they can be tolerant of temporarycaregivers and babysitters. However, if separa-tions are prolonged, they become distressed,especially if they are not permitted to visit theparent in the hospital. In these situations, aplanned visit can reduce their anxiety dramat-ically and lead to improved behavior at home.Some patients want to protect their childrenfrom their altered appearance. However, wefound that most children this age spoke onlybriefly after the death about the sick parent’sappearance. They were more likely to feel re-jected by the parent’s not wanting to havethem visit.

Six- and four-year-old brothers were re-ported to be fighting more than usual eventhough they had a housekeeper during the daywhile their mother was in the hospital. When

the clinician asked how they were feeling abouttheir mother being in the hospital, they re-sponded angrily that she had been there for 62days. They knew that because they had beencrossing off the days on a calendar they broughtwith them. Their behavior improved markedlyafter the brief visit with their mother.

As with younger children, preparation forthe visit is essential. When the patient’s condi-tion and physical state, intravenous bottle, etc.,can be explained, the interaction with childrenis facilitated. Discussion afterward is easier andcan more readily clarify any misunderstanding.If parents cannot cope with visits, they can helpchildren by telephone communication and ex-change of letters, drawings, and gifts. However,seeing and hearing the patient and his or hercaregivers in the hospital not only provide thechild with an important confrontation withreality, but also with reassurance that is difficultto achieve in other ways.

Saying Good-bye

It was unusual for patients to talk with theirchildren this age about their own imminentdeath. When an ill parent did so, the childoften reminisced with pleasure about havingsaid final good-byes to the patient. However, asothers have suggested, saying the word good-bye seemed not as important as a final hug,squeeze of the arm, and repeated affirmation oflove.

A 6-year-old said, “I wanted to hear thosemagic words, ‘I love you.’”

An 8-year-old remembered his father say-ing, “I love you,” to him.

One 7-year-old remembered how she hadhugged her mother.

Another 7-year-old was comforted by re-membering that, even though her mothercould not talk any more, she had squeezed herhand. For months, she put herself to sleep withthis tactile memory.

If children did not say good-bye to the pa-tient directly, they were often comforted bywriting their thoughts down and placing themin the coffin. The mother of one 8-year-oldboy placed his letter in her husband’s hand inthe casket.




merican C



Dow

nloaded from



In contrast to their younger peers, childrenthis age generally understand the finality of theparent’s death after an illness and are appropri-ately sad and upset when informed. Many par-ents say telling their young children about theparent’s death was the most difficult task theyhad ever faced. These children express sadness,anger, and dejection connected with thoughtsabout the parent, but then often quickly returnto normative activities. Even when they werewell prepared, some expressed surprise andacute distress. They have more physical symp-toms than older children, as well as fearfulness,sleeping problems, and separation anxiety.Children this age more than any other mightspeak openly and explicitly about wanting todie so they can be with or visit the parent soonafter the death. Generally, these are transientthoughts and not accompanied by suicidal in-tent or plans. If they persist or became rigid andinflexible, a professional evaluation is recom-mended. Their mourning is also frequently ex-pressed by joyous memories of the deceasedparent, which is disconcerting to survivingspouses unless they understand that this is anadaptive way to retain a connection to theparent who died. The children spoke openlyabout talking with the parent who died, and formost, these were comforting experiences.

A 7-year-old girl told her father, “I’m goingto pray for Mommy tonight when I give theblessing. Are you going to be sad?” When hesaid he would be, she brought a large box oftissues to the table and told him, “You alwaysfeel better after you cry.”

How the Parent is Mourned

Whatever their religion, children this agetend to locate the parent who died in a place(usually heaven) and often with a function.Most thought the parent watched over them.

After receiving coins for her lost tooth, one7-year-old girl said, “I know where Mom is—she’s the tooth fairy!” Her father affirmed thathe thought her mother would love that job.

The image retained of the parent is that ofthe loving caregiver, provider of good things,

and strong, much admired hero or heroine.Active, open, and vocal construction of thisimage seems to comfort them even thoughsuch openness continues to be difficult for theirgrieving parent. Like their younger peers, theyalso request a replacement parent, less ambiv-alently if the parent who died was the samegender as the child. They love talking aboutand recalling pleasant episodes they had withthe parent who died, surrounding themselveswith their pictures, and incorporating the par-ent’s clothing or other objects into their play.

After a long parent illness, children this agedid express some relief that the parent had diedand was no longer suffering. They also feltrelief that they had survived what they fearedwould be a catastrophic event.

One 8-year-old said, “I can talk more aboutmy mom now than I could before she diedbecause the worst has happened and it’s over. Idon’t have to worry that I might make some-thing bad happen [by talking about it].”

Course of Recovery: Issues in Reconstitution

As occurred in every age grouping, most ofthe children returned to their previous levels offunctioning in psychological state, relationshipswith parent and siblings, academic performanceand activities, and relationships with teachersand peers by the end of the first year. It isimportant to note that most of these familieshad adequate financial resources to afford hir-ing substitute parenting and, unlike poor orrecent immigrant families, had few other familystresses.

Grief with these children is usually sporadicand brief. Immersion in school and playingwith friends are common even immediatelyafter the death and should be encouraged.Schools can be very helpful if teachers are no-tified. Many children were given permissionfor short visits to school counselors when theyfelt sad.

A 7-year-old was overjoyed when one ofher friends came to the funeral and went to playwith her.

Another 6-year-old felt reassured and ac-cepted when classmates gave her a large bowl




merican C



Dow

nloaded from


of notes and drawings they made for her afterher father died.

At home, bedtime is especially hard. Parentswere encouraged to spend time each nightreading a story and talking about pleasantmemories of the parent. Some slept with theparent for weeks or months.

These children reacted more to additionalstress or pressure, some with increasing diffi-culty in separating from their parent when theywere going to school, and even more so onMondays after a weekend at home. Parentssometimes included a love note with lunchesor gave permission for the child to call homefor a quick chat. Limit setting, temper out-bursts, temporary regression like bed wetting,and clinging were common. Parents appreci-ated advice about handling those behaviors,understanding them as normal, and graduallyimproving behaviors. Difficulty in concentrat-ing in school and a drop in grades were com-mon, and children needed to be reassured thatthose problems were understandable and tem-porary. For most children, misbehavior tookplace at home, not in school. Parents grudg-ingly appreciated that as a better alternative.

NINE- TO ELEVEN-YEAR-OLD CHILDREN: THEYOUNG SCIENTIST

Key Developmental Features

Y There is a major change in thinking ability(concrete operational)—these children canuse logical thinking, understand cause andeffect, and retrace memories to reverse andcorrect erroneous conclusions.

Y Unlike early adolescents, they cannot drawinferences from insufficient information.They need detailed, concrete explanationsabout the parent’s illness and course of treat-ment to understand and feel a sense of con-trol.

Y In contrast to younger children, they areable to use compartmentalization and dis-traction to avoid strong emotion.

Y They may have outbursts of emotion fol-lowed by embarrassment and avoidance.

Y These children benefit from being able to

help with the care of the ill parent; however,they should not be left independently incharge of a seriously ill parent.


Many children this age showed a need forcarefully sequenced information about the par-ent’s illness, treatment, and impending death.They were able to integrate relatively concreteand detailed information about the illness with-out becoming overwhelmed and confused.However, they became frustrated and angry ifthey were not given enough information. Theywere unable to comprehend the context in theabsence of more comprehensive detail.

An 11-year-old boy said, “Last year, Dadwent to the hospital, but they didn’t tell me itwas cancer. I thought it was not cancer, just atumor. My mom finally put it straight to me,but I had to go up to her and ask. Now that Iknow what’s going on, I understand. Dad usedto be grouchy, and I didn’t understand. Ithought he was mad about something. Now itdoesn’t seem that he is mad at me.”

In contrast to younger children, who couldbecome fixated on particular erroneous ideas,children this age were able to reverse theirthinking and correct logical errors.

A 9-year-old girl described how she wasdifferent from her 6-year-old sister. “She ismuch younger, and she doesn’t take things aswell as me, she doesn’t understand.” She ex-plained that when her parents clarified the factthat she was not responsible for her mother’sillness, she believed them, but her sister was notso sure. “I know it’s not my fault, and Icouldn’t have done nothing to prevent it. Itwasn’t our fault.”

The importance of incremental informationwas highlighted by a study of the responses ofchildren this age who lost parents in or hadhigh exposure to the 9/11 World Trade Centerattacks. The bereaved children this age werethe most symptomatic group of children incitywide school surveys.40 The total unexpect-edness of the event deprived them of theirability to learn incrementally, and they wereoverwhelmed with the complexity of the eventand the enormity of the loss. In contrast, the




merican C



Dow

nloaded from


children this age whose parents died of cancerand who received continuous small doses ofinformation about the progression of the illnesswere among the best adjusted of the five de-velopmentally derived subgroups.

Some children in this age group expressedsadness about the parent’s expected deathrather than only the anxiety experienced byyounger children. They were the first group toconsistently anticipate the death and feel sadabout the future loss.

After a mother told her 10-year-old boy thathis father’s current treatment was ineffective,he wanted to look at photographs of his fatheras he had been before the illness. He said hethought about his father a lot and worriedabout him. He also wondered, “Who will playbasketball with me? Who will fix my bike?” Hethought he would want to be with his fatherwhen he died.

Many children had difficulty in school duringthe terminal illness, but some children in this agegroup were able to improve their performance,sometimes as a gift to the ill parent. It was also notunusual for these children to offer to help outwith taking care of the sick parent.

A 10-year-old boy volunteered to sleep inthe den with his father, waking up every 3 or 4hours to give him medication. He said he likedto help.

An 11-year-old girl became so expert at help-ing to transverse her father from the bed to awheelchair or stretcher that she instructed theambulance workers how to best do it when theycame to take him to the hospital. Her father wasvery proud of her special competence.

However, parents are cautioned about theimportance of not leaving a child of this ageplaced independently in charge of the care of aterminally ill parent. Unfortunately, where fi-nancial resources are inadequate, this does oc-cur. It places a heavy burden on the child withcommonly symptomatic outcomes and com-plicated bereavement if prolonged or whenmistakes are made and the parent then dies.


Children this age were more distressed thanyounger children by the parent’s changing ap-

pearance and ability to function, the reductionin family activities and trips, and the prospect ofa future without the parent’s assistance, sup-port, and love. They experienced some sepa-ration anxiety when the patient was in thehospital a long time and the well parent spent agreat deal of time there as well. Hospital visitsseemed helpful, especially when they includedcontact with medical and nursing staff whocould explain the care and treatment their par-ent was receiving. They even seemed to benefitfrom walking around the hospital and becom-ing familiar with the patient’s environment.Learning details and facts about the place, thetreatment, and the care helped them compre-hend the context and achieve some sense ofrelief and control. However, as with youngerchildren, preparing the patient, parent, and stafffor the visit helped to avoid misunderstandings.Careful preparation by the clinicians in theMSKCC study may have prevented the nega-tive results of hospital visits that have beenreported in retrospective studies.24,25 For ex-ample, some children were struggling with adrop in grades when their parent was hospital-ized, and they feared their sick parent wasdisappointed in their performance. The parentneeded to understand that it was normal tohave declines in grades at this time, an expectedconsequence of the love and worry of theirchild, and that it was important to praise theirefforts during the difficulties of parent illness.Children also valued the exchange of gifts andcards. Children this age seemed to find finalvisits meaningful even when little communica-tion was possible. They provided concrete ev-idence of the reality that the patient was dyingand gave them an opportunity for final inter-action.


It was viewed as optimal when a child saidon hearing of the parent’s death, “I was sur-prised, but I knew it [the death] was going tohappen because my mother kept me in-formed.” Still, managing intense emotions forchildren this age was difficult. Some had un-usually strong reactions, which they later dis-avowed.




merican C



Dow

nloaded from


One 11-year-old boy locked himself in hisroom when his mother came home from thehospital because he didn’t want to hear thenews until he was ready. Later, he was embar-rassed about this behavior.

Wanting to be alone for a while was notunusual. Some children cried or screamed. Oneboy laughed—an expression of acute anxiety.They needed time to collect themselves.

An 11-year-old girl was at school when hermother came to tell her that her father had diedafter 2 years of struggle with a brain tumor. Sheasked to be able to remain in school with herfriends and to complete a test in her last class.She thought her father would have been proudof her good grades during such a difficult time.

Children this age often avoided their ownand others’ strong emotions, especially thoserelated to grief. Participation in bereavementgroups or programs could help them to be-come more open, but often their feelings wereexpressed in more indirect ways, as by beingmessy, stubborn, argumentative, or more with-drawn. They tended to control their grief bycompartmentalizing—escaping by immersionin school and extracurricular activities. Diffi-culties with sleeping were ubiquitous; somealso developed phobias and fears or a preoccu-pation with ghosts.

These children treasured clothing and otheritems that had belonged to the parent. Theyprovided comfort and opportunities to remi-nisce about the parent, especially during thefirst year. They enjoyed looking at pictures oftheir parent in healthier and happier days, butoften in more private and less expressive waysthan did younger children.

How the Parent is Mourned

Like their younger peers, many children thisage left notes and gifts in the coffin with theirdead parent that reflected activities they en-gaged in together—a baseball, a letter. Manylistened intently to eulogies and rememberedthem. Some children this age organized theirown memorial services with their peers, givingeulogies or contributing to the eulogies of oth-ers.41 They want to be active participants.These children often thought of the parent

who died as watching them when they weresucceeding at school or in sports and imaginedthe parent being pleased with their perfor-mance. Rather than focusing only on the par-ent’s caretaking role, as did their younger peers,they retained an image of the parent as teacher,coach, advocate, and friend. The mother wasoften remembered as the family organizer, lovegiver, cheerleader, protector, and someonewith whom they could chat. Requesting a re-placement parent was quite uncommon incomparison to younger children. If it occurred,it seemed related to more practical needs, suchas relieving chores, helping with homework, orsports.

Like their younger siblings, these youngstersalso like to hear stories about the deceasedparent. The more realistic appraisal of 9- to11-year-olds is highlighted by humor, as in thefollowing episode:

An 11-year-old boy, his mother, and oldersiblings were watching the meteor showershortly after the father’s funeral. The 11-year-old had put two small bottles of his father’sfavorite whisky in his casket. Now he pointedout one star that seemed to careen out ofcontrol; “That’s Dad up there—he found mybottles of whisky.”

Course of Recovery: Issues in Reconstitution

The course of recovery of 9- to 11-year-oldchildren has much in common with that oftheir younger and older peers. Unique to thisage group are emphases on new developmentalcapacities: educational, recreational, and socialcompetencies. The stresses of the terminal ill-ness and the death result for many children intemporary depression, anhedonia, preoccupa-tion, and reduction in ability to concentrate.This sequence of responses can affect all do-mains (educational, recreational, social, andemotional). An important process of reconsti-tution is the gradual regaining of competencein these areas of great importance to children.The initial explosive outbursts, withdrawal,and anhedonia are of great concern to thesurviving parent. They were helped as singleparents to set limits, support, and encouragethese children, sidestepping the provocative




merican C



Dow

nloaded from


nature of the angry meltdowns. However,home and parent remained important to the 9-to 11-year-old children. They needed to investin activities outside the home while still retain-ing a close bond. They still valued their parent’slove and support. A different dimension ofstress and parental trial came from the adoles-cents who developmentally needed to separatefrom parent and home.

The 9- to 11-year-olds, 12- to 14-year-olds,and 15- to 17-year-olds spent much more timeaway from home than younger children. Thedifference, however, is that the 9- to 11-yearolds often moved to activities outside thehome, while the 2 adolescent groups movedaway from the close parental contact they pre-viously needed and enjoyed.

RECOMMENDATIONS FOR HELPING CHILDRENDURING A PARENT’S ILLNESS ACROSSDEVELOPMENTAL LEVELS

Some general approaches to helping chil-dren of all ages during a parent’s terminal illnessinclude the following:

(1) Plan parent visits during a long hospital-ization. While some retrospective studies havereported lingering distress in children from un-planned visits with the hospitalized par-ent,24,25,29 others have found that plannedvisits are often reassuring. In the MSKCCstudy, at 1-year follow up after the parent’sdeath, most children who had participated inthe intervention did not report lingering dis-tress about planned visits.1 Others have de-scribed the importance of planning with theparent and the patient, if possible, for how thevisit will go, limiting the time of the visitdepending on the developmental level of thechild and the physical and mental state of theparent, and informing the child about the treat-ment and equipment they are seeing.42 Whilechildren should be encouraged to visit the par-ent at intervals that are not too disruptive totheir lives, pushing them to visit if they arestrongly opposed is generally not recom-mended, unless it is the only opportunity for afinal visit.

(2) View communication as a process, not aone-time event. Communicating with childrenor adolescents about a parent’s terminal condi-tion is best done through careful dosing ofinformation over time, which builds a pathwayof open communication and trust that childrenwill be informed in a timely way about majorchanges in the parent’s functioning or progno-sis. The level of detail communicated about thesituation is greater with older than youngerchildren. Physicians should encourage parentsto provide open and hopeful, but not unreal-istic information. Efforts to treat and care forthe ill parent are emphasized, but the childmust also be assured of their own continuedcare and love. The resulting dialogue helpschildren cope with the painful uncertaintiesthat both parents and children must endure inthis highly stressful period.

(3) Children and adolescents generally expe-rience emotional reactions intermittently andfor brief periods of time interspersed with rapidreturn to normative functioning. Their capac-ity for sustained or intense emotion is limited.Sustained, intense grief may reflect symptom-atic responses to stress rather than health. Theirintermittent grief, as well as positive memoriesabout the parent, have been found to continueto emerge over the course of their develop-ment in response to additional stresses or de-velopmental advances.1,43,44

These and the more specific recommenda-tions in Tables 2 and 3 are directed to physi-cians and other health care professionalstreating life-threatening illnesses in patientswith children; pediatricians and psychiatristswho may treat children with physical or psy-chological symptoms of distress; and physiciansin palliative care programs and in hospices.Many physicians will not have direct contactwith family members other than their adultpatients and their spouses. However, integratedinto competent end-of-life care is the aware-ness that the patient is distressed when thefamily is adversely impacted and that the pa-tient wants the health care team to assist withtheir family’s needs. Finally the physician’s sup-port and appropriate use of direct services tofamilies provided by other members of themedical team promote effective family-




merican C



Dow

nloaded from


centered care. Families have been found tobenefit from consultation with a social workeror psychosocial professional during periods ofhigh stress and expected loss.45,46

Future Directions

The last decades of the 20th century con-tributed greatly to knowledge about childhoodbereavement, but much remains to be under-stood about the prevention of later adverse

consequences and the enhancement of growth-promoting components after the tragic loss of ayoung parent.

Three research directions for the 21st cen-tury show promise for more specific and lessconfusing and contradictory findings:

(1) Studying developmentally homogeneoussubgroups of children and the differing effectsof different types of deaths;

(2) Conducting longer-term prospectivestudies that include critical experiences (eg,

TABLE 2 Recommended Guidelines for Families during a Parent’s Terminal Illness

3- to 5-year-olds

1. Gradually/consistently explain changes due to cancer and treatment without being overly optimistic/pessimistic. Children can learn “script” of events without fullycomprehending meaning and importance; at this age, death is not understood as permanent.

2. Separation from primary caregiver is major concern at this age.3. Establish consistent time when child can ask questions and share feelings, such as bedtime.4. Provide consistent substitute caregiving when primary caregiver is unavailable.5. Use play and art to illustrate and concretize complex events that are occurring in family.6. Having “a good cry together” may be frightening rather than cathartic for young children.7. Anticipate child’s increased separation anxiety and need for reassurance that they will be cared for.8. Normalize intermittent, brief intense emotional expression—changing subject and going off to play are important safety valves.9. Encourage planned, time-limited visits during prolonged parental hospitalizations. Assure child has toys, activities to do with ill parent and that parent’s condition,

limited capacity is explained.10. Offer families consultation with social worker or other psychosocial professional for additional concerns.

6- to 8-year-olds

1. Provide timely information to children about parent’s illness; explain what child is seeing/hearing [eg, explain patient’s withdrawal is caused by illness, not lack oflove]. Once children believe their own view of events, it can be difficult to alter. Repetition is required.

2. Children can be overcome by parent’s strong anger or sadness. Controlled emotions are effective for discussing events.3. Normalize high emotionality at this age.4. Normalize children’s temporary reductions in school performance when stressed.5. Engage other family, friends, social workers, or other psychosocial professionals able to listen to emotional concerns if parent has difficulty listening empathically

due to own distress.6. Reassure child of parent’s strength and ability to provide care even when they express strong emotion.7. Acknowledge situation’s uncertainty and difficulty for everyone. Anticipatory anxiety can occur at this age, and children need support that family will continue.8. Reassure children that this is not their fault. Children blame themselves when bad things happen.9. Communicate with the child’s teachers and other significant adults about parent’s illness.

10. Arrange consistent substitute caregiving with people who communicate well with child.11. Prepare child for medical emergencies that may require parents to leave the house unexpectedly.12. Children require permission to ask questions and express emotions they fear may upset others.13. Normalize children’s need to maintain developmentally appropriate activities.14. Remind parents of their central role in maintaining self-esteem by providing praise.15. Prepare children to visit with parent in the hospital, explain what they are seeing, and make time for clarification afterward.16. Consider professional consultation for children this age if severe anxiety, fear, school phobia, preoccupation with self-blame, or persistent depression and low self-

esteem occur.

9- to 11-year-olds

1. Give children fairly detailed information when parent’s diagnosis is verified: name of the disease, specifics, symptoms, known causes, treatments, possible sideeffects—optimistic, hopeful communication, not unrealistic. Account for child’s observations.

2. Assure children the illness is not their fault.3. Acknowledge the stress of uncertainty for everyone, as well as the strength of family unit.4. Children this age may have feelings of sadness and loss about possibility of parent’s death.5. Have child visit during prolonged hospitalizations. Suggest possible discussions; explain parent’s condition and treatment. Children this age can benefit from meeting

medical and nursing staff and from exploring the hospital environment.6. Help child remain involved in after-school activities, sports, and ongoing contact with friends.7. Support children’s interest in helping with patient’s care, but child should not be independently in charge of the parent’s care.8. Remind parents that coalitions and special preferences within the family may cause distress.9. Encourage children’s interest in reading or writing about the disease or treatment and their responses if they want to do this.




merican C



Dow

nloaded from


terminal stage in predictable deaths, later re-sponses) that may clarify different outcomes;and

(3) Combining qualitative and quantitativeanalytic approaches provides a way to under-stand the realistic complexity of the area andpopulations under study. This may help to

clarify when groups may be unknowinglycombined whose findings cancel out clinicallyimportant variables.

This century has great promise to provide arich harvest of useful approaches to the psycho-logical support of children exposed to man-made and natural disasters, as well as diseases.

REFERENCES

1. Christ GH. Healing Children’s Grief: Surviv-ing a Parent’s Death from Cancer. New York,NY: Oxford University Press; 2000.

2. Sandler IN, Ayers TS, Wolchik SA, et al. Thefamily bereavement program: efficacy evaluationof a theory-based prevention program for

parentally bereaved children and adolescents. JConsult Clin Psychol 2003;71:587–600.

3. Siegel K, Karus D, Raveis VH. Adjustment ofchildren facing the death of a parent due tocancer. J Am Acad Child Adolesc Psychiatry1996;35:442–450.

4. Lin KK, Sandler IN, Ayers TS, Luecken L.Resilience in parentally bereaved children and

adolescents seeking preventive services. J ClinChild Adolesc Psychol 2004;33:673–683.

5. Christ GH, Siegel K, Christ AE. Adolescentgrief: �It never really hit meuntil it actually hap-pened.� JAMA 2002;288:1269–1279.

6. Freud S. Mourning and melancholia. In:Strachey J, ed. Standard Edition of the Com-plete Psychological Works of Sigmund Freud.

TABLE 3 Recommended Guidelines for Families Following a Parent’s Death

3- to 5-year-olds

1. Use concrete details to describe the fact that when a person dies, all bodily functions cease and person does not come back.2. Use play, drawing, and other expressive activities to enhance the child’s understanding.3. Normalize emotions children and others might feel so they can respond in ways others will understand.4. Describe what child can expect to happen, what role child can play, roles other people will play, how others will feel and behave, and how child may feel during

funerals and memorials. Encourage participation in these rituals.5. Assign caretaker able to take child out after a brief time if indicated. Such ceremonies are often too long for most preschoolers.6. Reinforce child’s need to continue positive activities.7. Reassure child about their ability and determination to provide continued love and care.8. Provide transitional objects that seem important to child: deceased’s possessions, clothing, letters, or gifts they may have left for child.9. Prepare for surge of separation anxiety, sleeping problems, desire to sleep with the surviving parent, clinging behavior, and other temporary regressive behaviors.

10. During first few weeks/months after the death, child may talk frequently about positive memories of parent and ask repeatedly where he/she has gone.11. Use available groups or bereavement programs for child. Engage others to listen and respond to questions if the parent is overwhelmed with own grief.

6- to 8-year-olds

1. Inform even young children about parent’s worsening condition when death is imminent.2. Consider final visit with patient—children value final expressions of love. Prepare by describing patient’s condition and suggesting what children can say or do. Just

touching the patient can be reassuring and helpful and exchanging gifts meaningful.3. Provide empathic support for initial responses to parent’s death. Permit return to normative activities.4. Have children attend traditional rituals and participate whenever possible.5. Children this age may ask blunt questions around time of the death: “Are you a widow now?”6. Children’s expressions of grief are often brief and episodic.7. At this age, increased separation anxiety and sleeping difficulties are likely, often expressed also in stubbornness and problems with behavior.8. Reassure children of parent’s strength and commitment to continued care and love of the children despite grief of surviving parent. Remember to praise child for their

efforts during such a difficult time.9. Give children objects or possessions of parent who died to provide a sense of connection and solace.

10. Suggest participation in available bereavement programs.11. Encourage discussion with other adults or professionals when parent is too distressed to listen to child’s often joyous remembrance.12. Inform the school of the death and explore supportive services available to child should they become upset there.

9- to 11-year-olds

1. Normalize both emotional avoidance at this age and emotional outbursts sometimes followed by embarrassment.2. Normalize increases in separation anxiety, behavioral and physical symptoms.3. Invite children to participate in ceremonies, either directly or indirectly through writing about parent or describing their views to other presenters at the rituals. Parents

should be open to having their friends attend, as well.4. Follow child’s lead about returning to school after the death; keep in mind, however, that staying out of school beyond the final ceremonies is usually not helpful.5. Help child choose appropriate mementos belonging to the patient.6. Reestablish family routines.7. Teach and encourage mourning and participation in bereavement programs if available.8. Inform school of death and explore supportive services available to their child there.




merican C



Dow

nloaded from


Vol. XIV. London, England: Hogarth Press;1957:273–302.

7. Bowlby J. Attachment and Loss: Loss, Sadnessand Depression. Vol. 3. New York, NY: BasicBooks; 1980.

8. Dowdney L. Childhood bereavement follow-ing parental death. J Child Psychol Psychiatry2000;41:819–830.

9. Brown GW, Harris T, Copeland JR. Depres-sion and loss. Br J Psychiatry 1977;130:1–18.

10. Birtchnell J. Early parent death and psychi-atric diagnosis. Soc Psychiatry 1972;7:202–210.

11. Crook T, Eliot J. Parental death duringchildhood and adult depression: a critical re-view of the literature. Psychol Bull 1980;87:252–259.

12. Harris T, Brown GW, Bifulco A. Loss ofparent in childhood and adult psychiatric disor-der: the role of lack of adequate parental care.Psychol Med 1986;16:641–659.

13. Worden JW. Children and Grief: When aParent Dies. New York, NY: Guilford Press;1996.

14. Sanders CM. Grief: The Mourning After.New York, NY: John Wiley & Sons; 1989.

15. Tremblay GC, Israel AC. Children’s adjust-ment to parental death. Clin Psychol 1998;5:424–438.

16. Bifulco A, Harris T, Brown G. Mourning orinadequate care? Reexamining the relationship ofmaternal loss in childhood with adult depressionand anxiety. Dev Psychopathol 1992;4:433–449.

17. Elizur E, Kaffman M. Factors influencing theseverity of childhood bereavement reactions. AmJ Orthopsychiatry 1983;53:668–676.

18. Kaffman M, Elizur E, Gluckson L. Be-reavement reactions in children: therapeuticimplications. Isr J Psychiatry Relat Sci 1987;24:65–76.

19. Saler L, Skolnick N. Childhood parentaldeath and depression in adulthood: roles of sur-viving parent and family environment. Am J Or-thopsychiatry 1992;62:504–516.

20. Kwok OM, Haine R, Sandler I, et al. Posi-tive parenting as a mediator of the relations be-tween parental psychological distress and mentalhealth problems of parentally bereaved children.J Clin Child Adolesc Psychol 2005;34:260–271.

21. Raveis V, Siegel K, Karus D. Children’s psy-chological distress following the death of a parent.J Youth Adolesc 1999;28:165–180.

22. Siegel K, Raveis V, Karus D. Patterns ofcommunication with children when a parent hascancer. In: Cooper C, Baider L, De-Nour AK,eds. Cancer and the Family. New York, NY:John Wiley & Sons; 1996:109–128.

23. Siegel K, Mesagno FP, Karus D, et al. Psy-chosocial adjustment of children with a terminallyill parent. J Am Acad Child Adolesc Psychiatry1992;31:327–333.

24. Saldinger A, Cain A, Kalter N, Lohnes K.Anticipating parental death in families withyoung children. Am J Orthopsychiatry 1999;69:39–48.

25. Saldinger A, Cain A, Porterfield K. Manag-ing traumatic stress in children anticipating paren-tal death. Psychiatry 2003;66:168–181.

26. Christ G, Siegel K, Karus D, Christ A. Eval-uation of a bereavement intervention. SocialWork in End-of-life and Palliative Care 2005;1:57–81.

27. Lamont E, Christakis N. Complexities inprognostication in advanced cancer: “to helpthem live their lives the way they want to.”JAMA 2003;290:98–104.

28. Rando T. On the experience of traumaticstress in anticipatory and post death mourning. In:Rando T, ed. Clinical Dimensions of Anticipa-tory Mourning: Theory and Practice in Workingwith the Dying, Their Loved Ones and TheirCaregivers. Ottawa, Canada: Research Press;2000:155–221.

29. Saldinger A, Cain A. Deromanticizing antic-ipated death: denial, disbelief and disconnectionin bereaved spouses. J Psychosoc Oncol 2004;22:69–92.

30. Raphael B. The young child and the deathof a parent. In: Parkers C, Stevenson-Hinde J,eds. The Placement of Attachment in HumanBehavior. New York, NY: Basic Books; 1982;131–150.

31. Kranzler E, Shaffer D, Wasserman G, DaviesM. Early childhood bereavement. J Am AcadChild Adolesc Psychiatry 1990;29:513–520.

32. van Eerdewegh M, Bieri M, Parilla R, Clay-ton P. The bereaved child. Br J Psychiatry 1982;140:23–29.

33. Cheifetz PN, Stavrakakis G, Lester EP. Stud-ies of the affective state in bereaved children. CanJ Psychiatry 1989;34:688–692.

34. Gray R. Adolescent response to the death ofa parent. J Youth Adolesc 1987;16:511–525.

35. Gray R. The role of the surviving parent inthe adaptation of bereaved adolescents. J PalliatCare 1987;3:30–34.

36. Siegel K, Mesagno R, Christ G. A preventiveprogram for bereaved children. Am J Orthopsy-chiatry 1990;60:168–175.

37. Worden J. Grief Counseling and GriefTherapy: A Handbook for the Mental HealthPractitioner. 2nd ed. New York, NY: Springer;1991.

38. Christ G, Siegel K, Mesagno F, Langosch D.A preventive intervention program for bereavedchildren: problems of implementation. Am J Or-thopsychiatry 1991;61:168–178.

39. Ginsburg H, Opper S. Piaget’s Theory ofIntellectual Development. 3rd ed. EnglewoodCliffs, NJ: Prentice Hall; 1987.

40. Hoven CW, Mandell DJ, Duarte CS.Mental health of New York City Public Schoolchildren after 9/11: an epidemiologic investi-gation. In: Coates SW, Rosenthal JL, et al, eds.September 11: Trauma and Human Bonds Re-lational Perspectives Book Series. Hillsdale, NJ:Analytic Press, Inc.; 2003:51–74.

41. Hooyman N, Kramer B. Living throughLoss. New York, NY: Columbia UniversityPress; 2006.

42. Rauch P, Muriel A, Cassem N. Parents withcancer: who’s looking after the children? J ClinOncol 2002;21:4399–4402.

43. Christ G. Providing a home-based therapeu-tic program for widows and children. In: GreeneP, Kane D, Christ G, Lynch S, Corrigan M, eds.FDNY Crisis Counseling: Innovative Responsesto 9/11 Firefighters, Families, and Communities.New York, NY: Wiley; 2006.

44. Green P, Kane D, Christ G, Lynch S,Corrigan M, eds. FDNY Crisis Counseling:Innovative Responses to 9/11 Firefighters,Families, and Communities. New York, NY:Wiley; 2006.

45. Centers for Disease Control. Rates of homi-cide, suicide, and firearm-related death amongchildren—26 industrialized countries. MMWR1997;46:101–105.

46. Wolfe J, Klar N, Grier H, et al. Understand-ing of prognosis among parents of children whodied of cancer: impact on treatment goals andintegration of palliative care. JAMA 2000;284:2469–2475.




merican C



Dow

nloaded from
