How Do We Talk to the Children? Child Life Consultation To Support the Children of Seriously Ill Adult Inpatients

Abstract

Background: Families with young children often struggle to talk about and cope with a parent's life-threatening illness and potential death. Adult interdisciplinary palliative medicine teams often feel unprepared to facilitate the open communication with these children that has been shown to reduce anxiety, depression, and other behavioral problems. In pediatric settings, child life specialists routinely provide this support to hospitalized children as well as their siblings and parents. Although these services are the standard of care in pediatrics, no research reports their use in the care of children of adults with serious illness.

Objective: Our aim is to describe a pilot child life consultation service for the children of seriously ill adult inpatients.

Design: We summarize the support needs of these children, their families, and the medical staff caring for them and report our experience with developing a child life consultation service to meet these needs.

Setting/Subjects: Our service assists seriously ill adult inpatients and their families in a university medical center.

Results: Informal feedback from families and staff was uniformly positive. During consultations, family and child coping mechanisms were assessed and supported. Interventions were chosen to enhance the children's processing and self-expression and to facilitate family communication.

Conclusion: All hospitals should consider providing broad-based in-service training enabling their staff to improve the support they offer to the children of seriously ill parents. Medical centers with access to child life services should consider developing a child life consultation service to further enhance this support. More research is needed to evaluate both the short- and long-term clinical impact of these interventions.

AA was a 54-year-old man with severe liver damage caused by blunt trauma during a farming accident months earlier. His course was complicated by hemorrhage, multiple infections, and surgeries, and ultimately multi-organ system failure requiring extensive life-sustaining interventions. The palliative care service was consulted by the intensive care unit (ICU) team 3 days prior to AA's death. A family meeting was held with his wife, sister, and sister-in-law, during which they chose not to further escalate medical interventions. It was clear to all involved that AA was dying. It was equally clear that it would be hard to let him go.

Foremost among his family members' many concerns was how they would talk to his three children, ages 7 to 15 years old, during a planned visit to the hospital. Struggling with her own sense of impending loss, AA's wife needed emotional support and the words to tell her children that their father was going to die. The children needed help to hear and process those words. A child life specialist was consulted.

Introduction

Background

One of the most common concerns of seriously ill parents is the welfare of their children.^1–3 Twenty-five percent of oncology patients have under-age children at home.⁴ In the United States, between 3.5% and 5% of children under age 18 will experience the death of a parent.^5,6 Millions of parents are therefore struggling with the challenge of raising their children even as they struggle with their own or a partner's serious illness.^3,7 Although hospitalized adult patients with serious illness increasingly have access to palliative medicine services, the children of these patients frequently do not. Various ad hoc strategies may be used by palliative medicine interdisciplinary teams to support these children and their parents, but team members rarely have specific training to work with children.^8–12 In pediatric settings, by contrast, child life specialists routinely fill this support role, mediating and facilitating communication with children to help them and their parents cope with serious illness.¹³

In this paper we review the needs of patients as parents, the emotional responses of children to a parent's serious illness, and the challenges experienced by the staff caring for both. We then review the role of the child life specialist and describe our 3-year experience developing a novel child life consultation service to extend these services to the children of seriously ill adult patients.

Patients' needs

AA's wife struggled to explain her husband's deteriorating condition to her children. She was also at a loss as to how to support each of them given their different ages and temperaments. Prior to the arrival of her children, a child life specialist met with her to discuss these issues.

A parent's terminal stage of an illness exposes children to significant levels of stress, such as disruption of routine, change in discipline levels, and change in the level of support a parent can offer.⁴ Unfortunately, there are limited resources available within most health care settings to support families during this tumultuous time.^4–16 Additionally, in many inpatient and intensive care settings, visits by children are restricted, prohibited, or discouraged by institutional rules or due to staff concerns, creating further barriers to time together as a family.^17–23 Seriously ill patients may struggle to maintain their role as parents.²⁴ Meanwhile, nonill partners often take on responsibilities previously handled by the patient even as they struggle to support their family and cope with their own emotional response.^20,25–27 Patients are often uncertain how to discuss their illness with their children, not knowing what words to use, how to discuss treatment and side effects, or how to explain the possibility of death.^28–31 All of these factors add significant stress to an already difficult situation.

Children's needs

When the children arrived, informal assessment confirmed each child's developmental level as well as immediate coping style. With support from the child life specialist, AA's wife was able to introduce the idea that AA's body was getting tired, that his heart and lungs were slowing, and that it was likely that he would die in the next few days. This was the first time the children had formally heard of his impending death. Anticipatory grief was cyclical. Breaks and stories were interspersed with emotional processing and anguish. Children were encouraged to think about what they would like to do with, or say to, their father prior to his death.

For the children of patients facing terminal illness, the practical and emotional changes are profound. As family unity and communication are disrupted, children may experience confusion and anxiety, and require more emotional support.^32–34 Up to 25% of children will experience lowered and/or anxious mood, sleep problems, poor concentration, or difficulties at school.³⁵ Most children respond to the stress of illness in the family with developmental regression.^36–37 School-age, pre-adolescent, and adolescent children whose parents are in terminal stages of illness display significantly higher levels of depression and anxiety than community controls.^38–44 Children (notably adolescent girls) whose parents are ill are more likely to exhibit both short- and long-term emotional and psychological problems such as adjustment disorder, decreased self-esteem, and an increased risk of other emotional disturbances.^45–52 Better psychological outcomes, such as lower levels of depressive symptoms and anxiety for the children, have been associated with openness of general communication with the surviving parent and sharing of information about the other parent's death.^39,40 Similar results have been shown in siblings of sick children.^41–43 Children's anxiety is lessened in the long term when the truth about treatment and prognosis is disclosed.^25,53–57 Finally, much of the emotional distress experienced by the children precedes a parent's death,³⁹ suggesting a need for support services before an anticipated death.

Staff needs

The staff caring for seriously ill adult patients may not feel prepared to discuss the support needs of those patients' children. Providers are frequently asked how best to communicate with children during a parent's terminal illness; yet, they may avoid discussions because they fear they will distress the patient or they are reluctant to engage with the children.^54–64 Although they often have training in and experience with breaking bad news to adult patients, staff usually lack this training and experience in dealing with children.^65,66 Many professionals from the fields of health care, education, and social work do not feel equipped to facilitate conversations about the illness and death of a parent within families, putting vulnerable children at risk of inadequate support.^61,67–69

Several papers, primarily in the nursing and social work literature, bring attention to this gap and offer resources to close it.^{10,18,27,30,70,71} Recommended interventions focus on educating staff (teaching developmental theory and child communication skills, focusing on the child in the context of the family), educating families (providing written and multimedia information to parents and children, encouraging role play, recommending contact with schools and therapists), and changing the environment (liberalizing ICU visitation, creating safe play spaces for children, reducing unneeded medical equipment). None of these interventions has yet been systematized or tested with staff in the adult medical context. In the pediatric context, however, these techniques and principles fall under the purview of the child life specialist.

Child Life Services in Adult Palliative Medicine

What are child life services?

The child life specialist is a master's degree-prepared health professional who provides developmentally driven psychosocial assessments and interventions to pediatric patients, their parents, and their healthy siblings. These interventions promote effective coping through play, preparation, education, and self-expression activities.^72–74 Child life specialists also facilitate communication among the patient, family members, and the health care team as well as within the family itself. Child life programs have existed for more than 50 years and are considered by the American Academy of Pediatrics to be “a quality benchmark of an integrated child health delivery system and an indicator of excellence in pediatric care.”⁷⁵ In hospitalized children, these interventions have been shown to decrease emotional distress, improve coping effectiveness, promote comfort, reduce sympathetic activation, improve understanding of hospitalization and procedures, speed surgical recovery, and facilitate overall adjustment both during and for at least a month after a hospital stay as measured both directly and by parents.^76–78 The anxiety and depression symptoms experienced by siblings of hospitalized children are also reduced while medical knowledge and health-related quality of life are improved.^43,73,79 For parents of hospitalized children, these interventions have been shown to decrease anxiety and increase participation in care.⁷⁶

The support of child life services differs from that of psychology and social work in that the primary focus is acute coping with hospitalization and illness issues based on the child's developmental level rather than the longer-term model used by psychology or the resource-based model sometimes favored by social work. The child life model is short term, aiming to increase a child's understanding of the situation and assist him or her with immediate coping mechanisms—aspects that make it ideal for dealing with the acute trauma of a parent's rapid decline. Child life specialists are active members of many pediatric and neonatal palliative medicine teams^13,80–83 but have so far been rarely utilized within adult palliative medicine.

The following day, the children returned for one more visit prior to the withdrawal of life-sustaining interventions from their father. The children were offered the choice of visiting, and final tasks they hoped to achieve were discussed. Each child was allowed time at AA's bedside. The oldest son preferred to visit his father's bedside, choosing to talk to his comatose father and share his sense of guilt for not preventing the accident. The middle daughter also had time alone with her father, reading a letter she had laboriously worked on the night before sharing her love and admiration of her father and listing the emotional gifts he had given her. The youngest child struggled, using denial and refusing to initiate closure with his father.

The role of child life services in adult palliative medicine

At the University of California, San Francisco (UCSF) Medical Center since 2007, the palliative care service and other teams have offered the support of a child life specialist to families of patients with life-threatening illnesses who have children under the age of 18. In the context of adult palliative medicine, referrals to child life focused on issues of communication between parents and children, changes in parent's health and prognosis, and support both before and during hospital and end-of-life visits. Interventions were either directly with the children or indirectly with the parents/caregiver/staff. If the patient was discharged prior to a visit, the specialist offered phone support.

Referrals to child life services were often helpful after milestone events in patient care such as difficulty explaining prognosis to a child, an abrupt decline in physical health, a relapse, a change in treatment plan, or a child's visit with a parent who is dying. Referrals were also made when a patient reported poor coping by the children at home or had specific questions about emotional support, legacy work, or how to talk with their children.

Assessment and interventions provided by child life services

Interventions with the children of adult patients varied depending on the child's developmental level and coping style. For children of all ages, overall needs were assessed by talking with the patient, the partner/spouse of the patient, and/or the health care team to determine what the children had already heard and how they had responded to the information. Previous coping style was discussed as well as previous experiences with illness, injury, or loss.

Based on their goals, the family then chose one or more support options. Given the stress they were experiencing around the patient's illness, the family's pre-morbid communication style was supported and not challenged. The ultimate goal of each intervention was to facilitate the use of pre-illness coping and communication methods.

If the children were present in the hospital, the child life specialist met directly with them away from the patient's bedside. Using art materials, books, and props such as dolls and puppets, informal assessments of each child's anticipated stress points, misunderstandings, questions, and unresolved feelings were assessed with the pertinent issues then communicated to the parent.^84–86

Additionally, the child life specialist helped each child and family to prepare for and structure visits, providing information and using activities designed to enrich understanding, promote coping, and decrease stress.⁷² This preparation might include a review of the medical equipment the child would see on the parent or specific behaviors and roles the child could use during a visit (e.g., touching a hand, giving a hug, the role of hair brusher or storyteller) to reduce the child's stress and encourage connection with the ill parent.^16,84–88 These interventions worked equally well for emotionally laden visits involving rapid change in the physical state of the parent or for preparatory visits when the parent was able to engage and participate. Coping techniques were rehearsed to allow the child a sense of control and to decrease fear about the visit.

(Additional resources to support these families are provided in Appendices 1 and 2.)

Time and other barriers to providing child life services

The time required for a consult visit varied depending on the emotional needs of the patient. Shorter interventions (approximately 30 minutes) took place when the patient and family members had very specific requests, such as how to tell the children that the parent's cancer had returned. Other interventions required multiple visits, and the most complex interventions required many hours, such as when the children were supported through the withdrawal of life-sustaining interventions or witnessed the death of their parent in the hospital.

Patient and family factors may impede the use of child life specialists in the adult palliative medicine setting. In our experience, referrals to meet a family were often generated during psychologically charged moments in the patient's care such as a relapse, a change in care plan, or the choice to withdraw life-sustaining interventions. Adults in the family may not be emotionally ready to focus on or discuss the needs of their children at the time that the intervention is offered. Finally, as in other areas of medicine, differing cultural norms may prove challenging when supporting the children of seriously ill patients. These cultural factors include ethnicity, national origin, family structure, faith, parenting style, generational differences, and socio-economic status.

Workplace barriers to implementing this type of service may include difficulty incorporating child life services into previously existing programs, difficulty accessing child life services in hospitals without pediatric programs (see below), scarcity of funding, resistance to a new role within the team, or administrative pressure to incorporate psychosocial support of the children of patients into the roles of existing team members. Despite some of these same barriers, child life consultation services have been successfully incorporated into the palliative medicine program at UCSF with uniformly positive feedback from staff and families.

Providing additional support

In medical centers that do not serve children there may be limited or no access to child life services. Even when child life specialists are available, they are unlikely to be the first line of contact for every family. Cross-training of other staff (e.g., physicians, unit nurses, and social workers) and attention to environmental factors therefore remains critical. Where child life specialists are available, they may be able to help provide this training and advice. As with other palliative medicine services, we believe that child life consultations are best used to provide an extra layer of support to families and staff.

Future Directions

Although the value of child life services is already well documented in inpatient pediatric settings, the novelty of this service in adult inpatient medicine means that clinical outcomes for this group have not yet been studied. For the affected children, important endpoints for investigation might include immediate and long-term measures of coping, anxiety, grief, and other psychiatric dysfunction (e.g., depression, behavioral disorders), especially in those who witness the death of their parent. For both seriously ill parents and their partners/families, it might additionally be helpful to document rates of complicated grief as well as satisfaction with their hospital experience and fulfillment in their parental role. Given the relative scarcity of child life programs in adult settings, it is also important to compare the effectiveness of child life specialist consultation with structured, developmentally based training of unit staff and/or other palliative medicine team members.

Conclusion

For millions of seriously ill parents, the health and welfare of their children is a top concern. Although they are often asked for help, practitioners trained in adult medicine may not feel prepared to support these children and their families. Our 3-year experience suggests that a child life specialist consultation service can bridge this gap. Using proven techniques to improve coping, processing, and self-expression in a developmentally appropriate manner, child life specialists help to facilitate the open communication that has been proven to reduce children's anxiety, depression, and other behavioral problems. For medical centers with access to child life services, it may be beneficial to explore the creation of a child life consultation service to support these children and their families. All hospitals should consider providing broad-based in-service training enabling their staff to improve the support they offer to the children of seriously ill parents.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Appendix 1: Resources to Offer Families

Appendix 2: Scripts for Parents to Use When Talking with Their Children

References

Greisinger

, Lorimar

, Aday

, Winn

, Baile

, Greisinger

. Terminally ill cancer patients: Their most important concerns. Cancer Practice, 1997; 5:147–154.

Carter

, MacLeod

, Brander

, McPherson

, Carter

, MacLeod

. Living with a terminal illness: Patients' priorities. J Adv Nur, 2004; 45:611–620.

Helseth

, Ulfsaet

. Parenting experiences during cancer. JAdv Nurs, 2005; 52:38–46.

Rauch

, Muriel

. The importance of parenting concerns among patients with cancer. Crit Rev Oncol, 2004; 49:37–42.

Office of the Chief Actuary of the Social Security Administration: Intermediate assumptions of the 2000 trustees report. Washington, D.C.: Social Security Administration, 2000.

Steen

. A comprehensive approach to bereavement. Nurse Pract, 1998; 23:54–68.

Lewis, FM:. The impact of cancer on the family: A critical analysis of the research literature. Patient Ed Counsel, 1986; 8:269–289.

Christ

, Sormanti

. Advancing social work practice in end-of-life care. Soc Work Health Care, 2000; 30:81–99.

Main

. Management of relatives of patients who are dying. J Clin Nurs, 2002; 11:794–801.

10.

Crider

, Pate

. Helping children say goodbye to loved ones in adult and pediatric intensive care units: Certified child life specialist—critical care nurse partnership. AACN Adv Crit Care, 2011; 22:109–112.

11.

Roberts

, Boyle

. End-of-life education in the pediatric intensive care unit. Crit Care Nurse, 2005; 25:151–157.

12.

Winch

. A nurse's role in helping well children cope with a parent's serious illness and/or hospitalization. J Soc Pediatr Nurses, 2001; 6:42–46.

13.

Himelstein

, Hilden

, Boldt

, Weissman

. Pediatric palliative care. New Engl J Med, 2004; 350:1752–1762.

14.

Thastum

, Johansen

, Gubba

, Olesen

, Romer

. Coping, social relations and communication: A qualitative exploratory study of children of parents with cancer. Clin Child Psychol Psychiatry, 2008; 13:123–138.

15.

Dunning

. As a young child's parent dies: Conceptualizing and constructing preventive interventions. Clin Soc Work J, 2006; 34:499–514.

16.

Rauch

, Muriel

, Cassem

. Parents with cancer: Who's looking after the children? J Clin Oncol, 2002; 20:4399–4402.

17.

Johnstone

. Children visiting members of their family receiving treatment in ICUs: A literature review. Intensive Crit Care Nurs, 1994; 10:289–292.

18.

Kean

. Children and young people visiting an adult intensive care unit. J Adv Nurs, 2010; 66:868–877.

19.

Vint

. Children visiting adults in ITU–what support is available? A descriptive survey. Nurs Crit Care, 2005; 21:149–159.

20.

Knutsson

SEM

, Bergbom

. Custodians' viewpoints and experiences from their child's visit to an ill or injured nearest being cared for at an adult intensive care unit. J Clin Nurs, 2007; 16:362–371.

21.

Knutsson

, Berghom

. Nurses' and physicians' viewpoints regarding children visiting/not visiting adult ICUs. Nurs Crit Care, 2007; 12:64–73.

22.

Knutsson

, Samuelsson

, Hellström

, Bergbom

. Children's experiences of visiting a seriously ill/injured relative on an adult intensive care unit. J Adv Nurs, 2008; 61:154–162.

23.

Kean

. Children and young people's strategies to access information during a family member's critical illness. J Clin Nurs, 2009; 19:266–274.

24.

Semple

, McCance

. Experience of parents with head and neck cancer who are caring for young children. J Adv Nurs, 2010; 66:1280–1290.

25.

Harpham

. When a Parent Has Cancer: A Guide to Caring for Our Children. New York: Harper Collins, 1997.

26.

Helping children when a family member has cancer: Dealing with diagnosis [Internet], 2010 [updated 06/17/2010]. www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithDiagnosis/dealing-with-diagnosis-ref. 2012 September 5.

27.

Baker

, Nieswiadomy

, Arnold

. Nursing interventions for children with a parent in the intensive care unit. Heart Lung, 1988; 17:441–446.

28.

Turner

, Clavarino

, Yates

, Hargraves

, Connors

, Hausmann

. Development of a resource for parents with advanced cancer: What do parents want? Palliat Support Care, 2007; 5:135–145.

29.

Semple

, McCance

. Parents' experience of cancer who have young children. Cancer Nurs, 2010; 33:110–118.

30.

Clark

. Children visiting family and friends on adult intensive care units: The nurse's perspective. J Adv Nurs, 2000; 31:330–338.

31.

Clark

, Harrison

. The needs of children visiting on adult intensive care units: A review of the literature and recommendations for practice. J Adv Nurs, 2001; 34:61–68.

32.

Craft

, Cohen

, Titler

, DeHamer

. Experiences in children of critically ill parents: A time of emotional disruption and need for support. Crit Care Nurs Q, 1993; 16:64–71.

33.

Kirwin

, Hamrin

. Decreasing the risk of complicated bereavement and future psychiatric disorders in children. J Child Adolesc Psychiatric Nurs, 2005; 18:62–78.

34.

Osborn

. The psychosocial impact of parental cancer on children and adolescents: A systematic review. Psychooncology, 2007; 16:101–126.

35.

Moore

, Rauch

. Addressing the needs of children when a parent has cancer. Holland

. Psychooncology, 2nd. Oxford: Oxford University Press, 2010; 527–531.

36.

Oremland

, Oremland

. The Effects of Hospitalization on Children: Models for Their Care. Springfield, IL: Charles C, Thomas, Publisher, 1973.

37.

Bowlby

. Attachment, Loss: Loss, Sadness, Depression, 3. New York: Basic Books, 1980.

38.

Siegel

, Mesagno

, Karus

et al. Psychosocial adjustment of children with a terminally ill parent. J Am Acad Child Adolesc Psychiatry, 1992; 31:327–33.

39.

Siegel

, Karus

, Raveis

. Adjustment of children facing the death of a parent due to cancer. J Am Acad Child Adolesc Psychiatry, 1996; 35:442–450.

40.

Raveis

, Siegel

, Karus

. Children's psychological distress following the death of a parent. J Youth Adolesc, 1999; 28:165–180.

41.

Craft

, Waytt

, Sandell

. Behavior and feeling changes in siblings of hospitalized children. Clin Pediatrics, 1985; 24:374–388.

42.

Kleiber

, Montgomery

, Craft-Rosenberg

. Information needs of the siblings of critically ill children. Child Health Care, 1995; 24:47–60.

43.

Prchal

, Landolt

. Psychological interventions with siblings of pediatric cancer patients: A systematic review. Psychooncology, 2009; 18:1241–1251.

44.

Gazendam-Donofrio

, Hoekstra

, van der Graaf

WTA

, van de Wiel

HBM

, Visser

, Raveis

, Siegel

, Karus

. Children's psychological distress following the death of a parent. J Youth Adolesc, 1999; 28:165.

45.

Visser

, Huizing

, Van der Graaf

WTA

, Hoeskstra

, Hoekstra-Weebers

. The impact of parental cancer on children and the family: A review of the literature. Cancer Treatment Rev, 2004; 30:683–694.

46.

Compas

, Worsham

, Ey

, Howell

. When mom or dad has cancer: II. Coping, cognitive appraisals, and psychological distress in children of cancer patients. Health Psychol, 1996; 15:167–175.

47.

Armistead

, Klein

, Forehand

. Parental physical illness and child functioning. Clin Psychol Rev, 1995; 15:409–422.

48.

Lewandowski

. Needs of children during the critical illness of a parent or sibling. Crit Care Nurs Clin North Am, 1992; 4:573–585.

49.

Segal

, Simkins

. Helping Children with Ill or Disabled Parents: A Guide for Parents and Professionals. London: Jessica Kingsley, 1996.

50.

Prugh

. Children's Reactions to Illness Hospitalization, Surgery. New York: Atheneum, 1972.

51.

Romer

, Barkmann

, Schulte-Markwort

, Riedesser

. Children of somatically ill parents: A methodological review. Clin Child Psychol Psychiatry, 2002; 7:17–38.

52.

Compas

, Worsham

, Epping-Jordan

, Grant

, Mireault

, Howell

, Malcarne

. When Mom or Dad has cancer: Markers of psychological distress in cancer patients, spouses and children. Health Psychol, 1994; 13:507–515.

53.

McCue

. How to Help Children Through a Parent's Serious Illness. New York: St. Martin's Press, 1994.

54.

Lederberg

. The family of the cancer patient. Holland

, Breitbart

et al. Textbook of Psycho-Oncology. New York: Oxford University Press, 1998; 981–993.

55.

Zabora

, Smith

. Family dysfunction and the cancer patient: Early recognition and intervention. Oncology, 1991; 5:31–38.

56.

Resenheim

, Reicher

. Informing children about a parent's terminal illness. J Child Psychol Psychiatry Allied Disciplines, 1985; 26:995–998.

57.

Greening

. The bear essentials' program: Helping children and their families cope when a parent has cancer. J Psychosoc Oncol, 1992; 10:47–61.

58.

Fallowfield

, Jenkins

, Beveridge

. Truth may hurt but deceit hurts more: Communication in palliative care. Palliat Med, 2002; 16:297–303.

59.

Maguire

. Barriers to psychological care of the dying. BMJ, 1985; 291:1711–1713.

60.

Hebert

, Prigerson

, Schulz

. Preparing caregivers for the death of a loved one: A theoretical framework and suggestions for future research. J Palliat Med, 2006; 9:1169–1171.

61.

Fearnley

. Death of a parent and the children's experience: Don't ignore the elephant in the room. J Interprofessional Care, 2010; 24:450–459.

62.

Saldinger

, Cain

. Deromanticizing anticipated death: Denial, disbelief and disconnection in bereaved spouses. J Psychosoc Oncol, 2004; 22:69–92.

63.

Rando

. Clinical Dimensions of Anticipatory Mourning: Theory, Practice in Working with the Dying Their Loved Ones Their Caregivers. Ottawa, Canada: Research Press, 2000.

64.

Saldinger

, Cain

, Kalter

, Lohnes

. Anticipating parental death in families with young children. Am J Orthopsychiatry, 1999; 69:39–48.

65.

Girgis

, Sanson-Fisher

. Breaking bad news 1: Current best advice for clinicians. Behav Med, 1998; 24:53–59.

66.

Walsh

, Girgis

. Breaking bad news 2: What evidence is available to guide clinicians? Behav Med, 1998; 24:61–72.

67.

National Institute for Clinical Excellence. Guidance on Cancer Services: Improving Supportive Palliative Care for Adults with Cancer: The Manual. London: National Institute for Clinical Education, 2004.

68.

Christ

, Sormanti

. Advancing social work practice in end-of-life care. Soc Work Health Care, 2000; 30:81–99.

69.

Main

. Management of relatives of patients who are dying. J Clin Nurs, 2002; 11:794–801.

70.

Christ

, Siegel

, Christ

. Adolescent grief: “It never really hit me…until it actually happened.” JAMA, 2002; 288:1269–1278.

71.

Rozkilsky

. Enhancing sibling presence in the pediatric ICU. Pediatr Crit Care, 2005; 17,4:451–461.

72.

Leeuwenburgh

, Sanzari

. Child life specialist: Advocator, educator and supporter of children confronting the dying and death of a loved one. Child Life Focus, 2007Spring1–8.

73.

Gursky

. The effect of educational interventions with siblings of hospitalized children. J Dev Behav Pediatr, 2007; 28:392–398.

74.

Murray

. A qualitative exploration of psychosocial support for siblings of children with cancer. J Pediatr Nurs, 2002; 17:327–337.

75.

Wilson

. American Academy of Pediatrics Committee on Hospital Care: Childlife services. Pediatrics, 2006; 118:1757–1763.

76.

Wolfer

, Gaynard

, Goldberger

, Laidley

, Thompson

. An experimental evaluation of a model child life program. Child Health Care, 1988; 16:244–254.

77.

Brewer

, Gleditsch

, Syblik

, Tietjens

, Vacik

. Pediatric anxiety: Child life intervention in day surgery. J Pediatr Nurs, 2006; 13–22.

78.

Vernon

, Thompson

. Research on the effect of experimental interventions on children's behavior after hospitalization: A review and synthesis. J Dev Behav Pediatr, 1993; 14:36–44.

79.

Simon

. Perceived stress of nonhospitalized children during the hospitalization of a sibling. J Pediatr Nurs, 1993; 8:298–304.

80.

Carter

, Levetown

. Palliative Care for Infants Children, Adolescents: A Practical Handbook. Baltimore, MD: Johns Hopkins University Press, 2004.

81.

Browning

, Solomon

. The initiative for pediatric palliative care: An interdisciplinary educational approach for healthcare professionals. J Pediatr Nurs, 2005; 20:326–334.

82.

American Academy of Pediatrics Committee on bioethics, committee on hospital care: Palliative care for children. Pediatrics, 2000; 106:351–357.

83.

National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, 2nd. Pittsburgh: National Consensus Project, 2009.

84.

Kauffmann

, Harrison

, Burke

, Wong

. Stress-point intervention for parents of children hospitalized with chronic conditions. Pediatr Nurs, 1998; 24:362–366.

85.

Thompson

. The Handbook of Child Life: A Guide for Pediatric Psychosocial Care. Springfield, IL Charles

. Thomas Publisher Ltd., 2009.

86.

Kain

, Caldwell-Andrews

. Preoperative psychological preparation of the child for surgery: An update. Anesthesiol ClinNorth Am, 2005; 23:597–614.

87.

Mahajan

, Wyllie

, Steffen

, Kay

. The effects of a psychological preparation program on anxiety in children and adolescents undergoing gastrointestinal endoscopy. J Pediatr Gastroenterol Nutr, 1998; 27:161–165.

88.

Davidson

, Powers

, Hedayat

, Tieszen

, Kon

, Sherpard

et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine task force 2004–2005. Crit Care Med, 2007; 35:605–622.

89.

Kirchohoff

, Palzkill

, Kowalkowski

, Mork

, Gretarsdottir

. Preparing families of intensive care patients for withdrawal of life support: A pilot study. Am J Crit Care, 2008; 17:113–121.

90.

Smith

. A Tiny Boat at Sea: How to Help Children Who Have a Parent Diagnosed with Cancer, 2nd. Portland, OR: Grief Watch, 2000.