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Supporting Children's Grief within an Adult and Pediatric Palliative Care Program
Children are too often the forgotten mourners in the homes of dying patients. Children, even young children, and youth grieve and mourn the threatened and, then, actual loss of a dying parent, sibling, or other significant family member.1 At a time when the family resources and focus are pulled away and taxed, caregivers are tasked with the difficult job of sorting through their own emotions and a wealth of advice. Caregivers must decide how they will communicate with, include, and support the children/youth in their care.
Although evidence is incomplete and there is a clear need for further studies, links between unresolved childhood grief, or an inability to adequately process their grief, and subsequent psychiatric conditions such as depression and anxiety have been presented as far back as Freud.[2], [3], [4] and [5] In addition, prevalent feelings of responsibility and exclusion and poor communication are consistently identified by researchers interviewing bereaved children/youth about their own experience over the last couple of decades.[6], [7] and [8] Therefore, given the risk of negative psychological and social outcomes associated with children's grief and the struggles communicated by children themselves, it is critical to recognize the important and preventive role of supportive interventions, especially prior to the death of a significant family member.
Looking at caregivers' experiences, there is still a large divide between the advice given by many family and friends in this situation (see Table 1) and what has become accepted within the palliative and grief counseling fields as “best practice.”[6], [7] and [8] In addition, family members' access to professionals trained or knowledgeable in this area is growing but usually still limited.9 Many children/youth are left uninformed, unprepared, and cut off from their family's support.
Table 1. Myths and Realities about Speaking to Children about Grief and Dying. Adapted from MacPherson C.10
Professionals are not immune to subscribing to the myths listed in Table 1 and “are often inhibited by their anxieties about saying or doing the wrong thing and causing lasting emotional damage.”10 However, by communicating openly and honestly and including children/youth, informed care team members can offer many supportive interventions that a family can benefit from during the time leading up to and following the death. These interventions foster the best outcomes when they are offered early on in the palliative trajectory.[11] and [12]
Our Setting
The Temmy Latner Centre for Palliative Care (TLCPC) at Mount Sinai Hospital in Toronto is one of Canada's largest academic palliative care programs, incorporating a children's center, the Max and Beatrice Wolfe Children's Centre, which provides pediatric palliative care and children's grief programs (Dr. Jay Children's Grief Program). Our children's center supports children, youth, and their families when a family member is dying or has died. This support includes Canada's first Camp Erin, an overnight children's grief camp. Children are referred to these programs for grief counseling by our center's palliative care physicians, local palliative care units and hospices, and a wide variety of community agencies. Children's grief programs are very limited in our large urban setting, as is true in most communities across North America. We have four counselors devoted to child and youth grief support services.
What We Do
Action 1: Intake and Assessment
The center has an open referral policy, accepting referrals from any source, including self-referrals, regardless of the nature of the illness or cause of death.
An intake phone call, lasting between 15 and 60 minutes, is made to the family to assess their needs and to provide psychoeducation and relevant resources. Based on our belief that early intervention provides the most supportive opportunities, families in which the patient is dying are prioritized.
As a result of demand for services being greater than our resources, children and their families bereaved at the time of referral are provided with an initial psychoeducational visit and assessment and then placed on a waiting list if further counseling is deemed appropriate.
In either case, the initial assessment often reveals that what the family needs most is psychoeducation about child/youth grief, communication and development, and reassurance about the benefits of the things they are already doing. Caregivers are provided with educational materials, including a copy of the center's publication Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers,11 a list of Web resources, books, and brochures written by us. All these resources are also available to professionals.
Action 2: Counseling
If further assessment and counseling are warranted, children are seen individually, with siblings and/or with their family depending on the needs and circumstances. The bulk of our counseling services are brief, typically lasting three or four sessions in total. However, more intensive counseling is available on a case-by-case basis, with progress and needs being assessed every four sessions. Counseling techniques including expressive arts, crafts, therapeutic play, and activities are used to support children/youth and families in the grieving process. Families are able to contact counselors when issues arise for them, which often occurs around anniversaries, holidays, other important events, and as children/youth develop and experience their grief in a new light.13
The center's model is resiliency-based, nonpathological, and family-centered. Caregivers are empowered as primary and ongoing sources of support and dominant role models for the grieving child and youth in their care. In addition to conversations with their counselor, families are offered monthly opportunities forcaregiver education and peer support and various therapeutic group activities for children/youth.
Action 3: Complex Cases
Referrals to secondary children's mental health services are facilitated for families with needs beyond the scope of our supportive grief services, including children with indicators of complicated grief who need more intensive counseling. For children with severe psychological distress, referrals are made to a pediatric psychiatrist with special interest in this area.
According to Rando,14 there are a number of forms of unresolved or complicated grief which can overlap, and each has components of denial or regression. These include feelings of grief and mourning being absent, an inhibition of some of the normal symptoms of grief, putting grief on hold for any reason, and when there is a dependent or ambivalent relationship with the deceased. Two common manifestations are extreme anger and extreme guilt.
Some types of death that place children/youth at risk for complicated grief include a sudden or unexpected death, a violent death, a death involving mutilation, the death of a child, and death as the result of a prolonged illness. Also included is complicated loss associated with social stigma such as imprisonment, suicide, AIDS, abortion, severe mental illness, serious family dysfunction, or addiction. However, the presence of these factors does not necessarily lead to complicated grief. Complicated loss is known to be mediated by personal, familial, and social factors that contribute to relative risk and resilience.
What We Say
Engaging a family early in the palliative journey allows greater opportunity to prepare children/youth and prevent possible negative outcomes.[6] and [15] Christ and Weisenfluh16 tell us that the greatest need for support is found during the weeks leading up to the death. A large component of the early intervention we offer is age-appropriate psychoeducation to help caregivers conceptualize how their child/youth may be experiencing and understanding what is happening. Caregivers who anticipate some of the thoughts, feelings, questions, and struggles that their child/youth might face are empowered and children benefit.
The 3 Cs
1. Can I catch it?
2. Did I cause it?
3. Who is going to take care of me?
Julie Stokes15 was able to summarize what children/youth think and worry about most when a family member is dying into three questions. We have coined these three questions the “Three Cs”: Catch, Cause, and Care.
Catch
The first “C” relates to the fear expressed by children/youth that they could catch the illness. Melanie, a 7-year-old, explained that she would have a brain tumor soon because her sister Sarah, who was dying of brain cancer at the time, “is my sister and we lived in the same room always.” If such concerns go unexplored and children are not given clear information, caregivers may see children/youth distance themselves from their ill family member, develop a fear that they and the rest of their family will get sick and die as well, and other implications.17
The weight of language in a child's understanding of illness, death, and dying cannot be emphasized enough.11 More often than not, indirect and generic language used by adults, such as referring to someone as being “sick” or “not doing well,” complicates a child's ability to differentiate between the common cold or flu and life-threatening diseases and illnesses. “My mom was sick and she died; therefore, all people that are sick die.” Many adults believe that their child is too young to understand what cancer means. While it is true that children may not be able to grasp the complex medical information about the illness, they are able to understand a great deal more than they are given credit for, and using the word “cancer” gives them a way to distinguish their dying family member's illness from others such as the common cold or flu.
Cause
The second “C” arises from the common thought in children/youth that they somehow caused or hastened the death and/or prevented the recovery of their family member. Cause is one of the five accepted subconcepts of the developmental understanding of death8 and among the last to be mastered due to its complexity and abstract components. As she sat under her pink bunk-bed, 5-year-old Tayah told her counselor that she had cancer when she was a little girl and then her mother got it after her. Eleven-year-old Joshua shared, “I just have to get to that cancer walk thing. If I can do that, then my mom will get her cure. That is what they said on TV you know, to walk for the cure!”
There are a number of ways that children/youth may try to own responsibility for the illness and death of their family member. They may believe that things they thought or did not think, did or did not do, felt or did not feel were directly related to the cause, progression, or death of the family member.18 These thoughts are especially strong for children in the magical thinking stage of development. In Piaget's theory of cognitive development, magical thinking dominates the preoperational stage (2–7 years old) and describes thinking disconnected from the laws of nature.19 Special attention should be given to assuring children in this age group that they are in no way responsible for the illness or death of their family member, as well as to avoid minimizing these fears and beliefs of responsibility.[6] and [17] This point will need to be readdressed often, with frequent reassurance that they are not responsible.
Care
The third “C” includes concerns about what will become of them and who will take care of them as well as the desire to help care for the dying person. While it is commonly thought that this fear is felt more significantly by children/youth who have a dying or deceased parent, siblings of dying or deceased children appear to be just as challenged. They will experience the same break in their belief that their family member will always be with them.20 Also, many children worry that their surviving parent will be incapacitated and unable to care for them after the death. Four-year-old Alex looked up at his mom one night and said, “You are dying in front of me. I'm scared. Who is going to turn out the light, I can't reach it, and who will cook for me, I can't turn on the stove?” This fear extends beyond who will take over the practical parental roles, to the worry that the child or youth will be orphaned.
Children will often connect their own experience to what they have seen or heard and fear the worst.[18] and [21] Orphans are ever present in children's literature and movies and are often depicted as abandoned to fend for themselves. For many, this fear is grounded in the reality that their current caregiver may not have been emotionally able to address issues of custody or guardianship or that they do not have anyone willing or able to care for the kids after their death. As Alice lay on her bedroom floor writing notes to her dying mother in the critical care unit, she shared, “My mommy and my daddy are dying … they is both going to die,” convinced that this was the truth. Alice's dad is healthy and has been for all of Alice's life.
“Three Cs” and Adolescents
Occasionally, adults have questioned the relativity of the “Three Cs” to our adolescent (ages 13–18) population. Our clinical work has led us to conclude that indeed the “Three Cs” are very real in the lives of the youth we work with. An example of this in relation to “Catch” is Sarah, who expressed distress over the familial traits of breast cancer and the likelihood that her fate will one day mirror that of her mother, aunt, and grandmother.
With regard to “Cause,” we hear youth talk about the relationship between the quality of their caregiving efforts and the death of their family member. Many youth express a feeling that if they had done a better job caregiving, their family member would not have died, especially for youth in primary caregiving roles and single-parent homes.14
When looking at “Care,” youth are impacted by their ability to think abstractly and to experience the loss of what is yet to come. Youth understand that they depend on their caregivers for much more than their practical needs. Joshua talked to his counselor about the loss he was feeling as he searched for employment without his father's help and network. He shared, “If my Dad was here, he would know someone; he would know what I should do.” Important to note is that age is not always the best predictor of cognitive capacity as we see school-aged children grapple with many of the thoughts more commonly expressed by our older population.
Whether or not a caregiver has already spoken with a child about a diagnosis and prognosis, it is helpful to get him or her to consider what the child may be thinking about. Using the foundation of the “Three Cs” will help caregivers understand the importance of open, honest, and concrete communication, as well as feel better equipped to provide their child/youth with support.
Teaching Parents How to Communicate with Their Children
It is difficult for a parent to witness the reaction of a child/youth to such difficult information. This challenge cannot be questioned. However, the benefit to children/youth of having their parents lead or participate in communications and psychoeducation about the cancer and terminal prognosis is clear.[6], [7], [8] and [12] Caregivers are able to clarify assumptions and misperceptions while modeling that it is permissible to talk about cancer and dying together.
Medical staff can facilitate opportunities for such family communications by including children in family meetings and discussions with medical staff and by explaining complex concepts to family members in a simple, concrete fashion. Caregivers often need professionals to welcome and encourage the children to be included. Staff can reassure parents that although they may fear that their children's inclusion will be harmful, on the contrary, inclusion is helpful.
Getting Started
1 Ask what the child/youth understands about the disease/illness.
2 Fill in any gaps in their understanding and explain the treatments that were given.
3 Explain cancer treatments such as chemotherapy, radiation, and surgery.
4 Ask the child/youth what he or she thinks is going to happen.
5 Explain in terms that can be understood that the family member will die.
In any conversation with children/youth about such complex and consequential material, follow their lead in regard to the amount of detail they want. Conceptualize it as an onion: You will want to provide the child/youth with clear and simple language describing basic information. Beyond that, peel off subsequent layers as the child/youth requests more information, always using clear and concrete language. The child/youth may be uncomfortable with the material and may attempt to change the topic. This is a healthy coping mechanism; the average child is quite good at knowing when he or she has reached the limit of their emotional attention span. Allow the child to take the conversation in a different direction, periodically checking to see if he or she is ready to come back to the topic at hand. The benefit of starting this course of conversation early is that it allows children/youth the chance to receive information in small, digestible pieces and the time to process and integrate the information to begin to make meaning of it.
Summary
“What about the kids?” is a dominant and consuming question for caregivers supporting children/youth around the dying and death of a family member. The concerns and fears encompassed in this question can overwhelm caregivers as they put vast amounts of energy into trying to protect children/youth from the suffering and pain that awaits them. Perhaps the hardest lesson these caregivers must learn is that they cannot protect their child/youth from the death any more than they can stop the death from happening. Instead, what is needed most from children/youth is to be included, prepared, and provided with a safe place for emotional expression. Children, as well as adults, will grieve in their own specific way, mediated by their developmental level, circumstances of the illness and death, and protective factors available to them. Providing comprehensive, whole-person care to palliative patients with children/youth in their care ought to include psychoeducation and support for all members of the family. Our communities' bereaved children/youth will be impacted by the death of their family members in countless ways throughout their lives. As professionals caring for people who are dying, we have a responsibility to mediate this impact to the best of our ability.
References1
1 J. Bowlby, Pathological mourning and childhood mourning, J Am Psychoanal Assoc 11 (1963), pp. 500–541. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (48)
2 L. Dowdney, Annotation: childhood bereavement following parental death, J Child Psychol Psychiat 41 (7) (2000), pp. 819–830. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (68)
3 K. Kirwin and V. Hamrin, Decreasing the risk of complicated bereavement and future psych disorders in children, J Child Adolesc Psychiat Nurs 18 (2) (2005), pp. 62–78. View Record in Scopus | Cited By in Scopus (10)
4 L. Saler and N. Skoinick, Childhood parental death and depression in adulthood: roles of surviving parent and family environment, Am J Orthopsychiatry 62 (4) (1992), pp. 504–516. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (35)
5 G. Mireault and L. Bond, Parental death in childhood: perceived vulnerability, and adult depression and anxiety, Am J Orthopsychiatry 62 (4) (1992), pp. 517–524. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (28)
6 G. Christ and A. Christ, Current approaches to helping children cope with a parent's terminal illness, CA Cancer J Clin 56 (2006), pp. 197–212. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (13)
7 P.R. Silverman, Never Too Young to Know: Death in Children's Lives, Oxford University Press, New York (2000).
8 J.W. Warden, Children and Grief: When a Parent Dies, Guilford Press, New York (1996).
9 L. Dowdney, R. Wilson, B. Maughan, M. Allerton, P. Schofield and D. Skuse, Psychological disturbance and service provision in parentally bereaved children: prospective case–control study, BMJ 319 (7206) (1999), pp. 354–357. View Record in Scopus | Cited By in Scopus (25)
10 C. MacPherson, Telling children their ill parent is dying: a study of the factors influencing the well parent, Mortality 10 (2) (2005), pp. 113–120.
11 C. Eaton-Russell, Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers, Temmy Latner Centre for Palliative Care, Toronto (2007).
12 D. Black, Childhood bereavement: distress and long term sequelae can be lessened by early intervention, BMJ 312 (1996), p. 1496. View Record in Scopus | Cited By in Scopus (14)
13 S. Leighton, Bereavement therapy with adolescents—facilitating a process of spiritual growth, J Child Adolesc Psychiatr Nurs 21 (1) (2008), pp. 24–34. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (4)
14 T. Rando, Grief, Dying, and Death: Clinical Interventions for Caregivers, Research Press, Champaign, IL (1984).
15 J. Stokes, Anticipatory grief in families affected by HIV/AIDS, Prog Palliat Care 2 (1994), pp. 43–48.
16 C. Christ and S. Weisenfluh, Parent and child bereavement. In: D. Walsh, Editor, Palliative Medicine (1st ed.), Saunders, Philadelphia (2008).
17 L. Kroll, J. Barnes, A.L. Jones and A. Stein, Cancer in parents: telling children, BMJ 316 (1998), p. 880. View Record in Scopus | Cited By in Scopus (22)
18 J. Piaget, Piaget's theory. In: P. Mussen, Editor, Handbook of Child Psychology (4th ed.), John Wiley & Sons, New York (1970), pp. 703–732.
19 M. Van Riper, Death of a sibling: five sisters, five stories, Pediatr Nurs 23 (6) (1997), pp. 587–593.
20 F. Thompson and S. Payne, Bereaved children's questions to a doctor, Mortality 5 (1) (2000), pp. 74–96. Full Text via CrossRef
21 C.M. Burns, T.W. LeBlanc, A. Abernethy and D. Currow, Young caregivers in the end-of-life setting: a population-based profile of an emerging group, J Palliat Med 13 (10) (2010), pp. 1225–1235. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (0)
Children are too often the forgotten mourners in the homes of dying patients. Children, even young children, and youth grieve and mourn the threatened and, then, actual loss of a dying parent, sibling, or other significant family member.1 At a time when the family resources and focus are pulled away and taxed, caregivers are tasked with the difficult job of sorting through their own emotions and a wealth of advice. Caregivers must decide how they will communicate with, include, and support the children/youth in their care.
Although evidence is incomplete and there is a clear need for further studies, links between unresolved childhood grief, or an inability to adequately process their grief, and subsequent psychiatric conditions such as depression and anxiety have been presented as far back as Freud.[2], [3], [4] and [5] In addition, prevalent feelings of responsibility and exclusion and poor communication are consistently identified by researchers interviewing bereaved children/youth about their own experience over the last couple of decades.[6], [7] and [8] Therefore, given the risk of negative psychological and social outcomes associated with children's grief and the struggles communicated by children themselves, it is critical to recognize the important and preventive role of supportive interventions, especially prior to the death of a significant family member.
Looking at caregivers' experiences, there is still a large divide between the advice given by many family and friends in this situation (see Table 1) and what has become accepted within the palliative and grief counseling fields as “best practice.”[6], [7] and [8] In addition, family members' access to professionals trained or knowledgeable in this area is growing but usually still limited.9 Many children/youth are left uninformed, unprepared, and cut off from their family's support.
Table 1. Myths and Realities about Speaking to Children about Grief and Dying. Adapted from MacPherson C.10
Professionals are not immune to subscribing to the myths listed in Table 1 and “are often inhibited by their anxieties about saying or doing the wrong thing and causing lasting emotional damage.”10 However, by communicating openly and honestly and including children/youth, informed care team members can offer many supportive interventions that a family can benefit from during the time leading up to and following the death. These interventions foster the best outcomes when they are offered early on in the palliative trajectory.[11] and [12]
Our Setting
The Temmy Latner Centre for Palliative Care (TLCPC) at Mount Sinai Hospital in Toronto is one of Canada's largest academic palliative care programs, incorporating a children's center, the Max and Beatrice Wolfe Children's Centre, which provides pediatric palliative care and children's grief programs (Dr. Jay Children's Grief Program). Our children's center supports children, youth, and their families when a family member is dying or has died. This support includes Canada's first Camp Erin, an overnight children's grief camp. Children are referred to these programs for grief counseling by our center's palliative care physicians, local palliative care units and hospices, and a wide variety of community agencies. Children's grief programs are very limited in our large urban setting, as is true in most communities across North America. We have four counselors devoted to child and youth grief support services.
What We Do
Action 1: Intake and Assessment
The center has an open referral policy, accepting referrals from any source, including self-referrals, regardless of the nature of the illness or cause of death.
An intake phone call, lasting between 15 and 60 minutes, is made to the family to assess their needs and to provide psychoeducation and relevant resources. Based on our belief that early intervention provides the most supportive opportunities, families in which the patient is dying are prioritized.
As a result of demand for services being greater than our resources, children and their families bereaved at the time of referral are provided with an initial psychoeducational visit and assessment and then placed on a waiting list if further counseling is deemed appropriate.
In either case, the initial assessment often reveals that what the family needs most is psychoeducation about child/youth grief, communication and development, and reassurance about the benefits of the things they are already doing. Caregivers are provided with educational materials, including a copy of the center's publication Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers,11 a list of Web resources, books, and brochures written by us. All these resources are also available to professionals.
Action 2: Counseling
If further assessment and counseling are warranted, children are seen individually, with siblings and/or with their family depending on the needs and circumstances. The bulk of our counseling services are brief, typically lasting three or four sessions in total. However, more intensive counseling is available on a case-by-case basis, with progress and needs being assessed every four sessions. Counseling techniques including expressive arts, crafts, therapeutic play, and activities are used to support children/youth and families in the grieving process. Families are able to contact counselors when issues arise for them, which often occurs around anniversaries, holidays, other important events, and as children/youth develop and experience their grief in a new light.13
The center's model is resiliency-based, nonpathological, and family-centered. Caregivers are empowered as primary and ongoing sources of support and dominant role models for the grieving child and youth in their care. In addition to conversations with their counselor, families are offered monthly opportunities forcaregiver education and peer support and various therapeutic group activities for children/youth.
Action 3: Complex Cases
Referrals to secondary children's mental health services are facilitated for families with needs beyond the scope of our supportive grief services, including children with indicators of complicated grief who need more intensive counseling. For children with severe psychological distress, referrals are made to a pediatric psychiatrist with special interest in this area.
According to Rando,14 there are a number of forms of unresolved or complicated grief which can overlap, and each has components of denial or regression. These include feelings of grief and mourning being absent, an inhibition of some of the normal symptoms of grief, putting grief on hold for any reason, and when there is a dependent or ambivalent relationship with the deceased. Two common manifestations are extreme anger and extreme guilt.
Some types of death that place children/youth at risk for complicated grief include a sudden or unexpected death, a violent death, a death involving mutilation, the death of a child, and death as the result of a prolonged illness. Also included is complicated loss associated with social stigma such as imprisonment, suicide, AIDS, abortion, severe mental illness, serious family dysfunction, or addiction. However, the presence of these factors does not necessarily lead to complicated grief. Complicated loss is known to be mediated by personal, familial, and social factors that contribute to relative risk and resilience.
What We Say
Engaging a family early in the palliative journey allows greater opportunity to prepare children/youth and prevent possible negative outcomes.[6] and [15] Christ and Weisenfluh16 tell us that the greatest need for support is found during the weeks leading up to the death. A large component of the early intervention we offer is age-appropriate psychoeducation to help caregivers conceptualize how their child/youth may be experiencing and understanding what is happening. Caregivers who anticipate some of the thoughts, feelings, questions, and struggles that their child/youth might face are empowered and children benefit.
The 3 Cs
1. Can I catch it?
2. Did I cause it?
3. Who is going to take care of me?
Julie Stokes15 was able to summarize what children/youth think and worry about most when a family member is dying into three questions. We have coined these three questions the “Three Cs”: Catch, Cause, and Care.
Catch
The first “C” relates to the fear expressed by children/youth that they could catch the illness. Melanie, a 7-year-old, explained that she would have a brain tumor soon because her sister Sarah, who was dying of brain cancer at the time, “is my sister and we lived in the same room always.” If such concerns go unexplored and children are not given clear information, caregivers may see children/youth distance themselves from their ill family member, develop a fear that they and the rest of their family will get sick and die as well, and other implications.17
The weight of language in a child's understanding of illness, death, and dying cannot be emphasized enough.11 More often than not, indirect and generic language used by adults, such as referring to someone as being “sick” or “not doing well,” complicates a child's ability to differentiate between the common cold or flu and life-threatening diseases and illnesses. “My mom was sick and she died; therefore, all people that are sick die.” Many adults believe that their child is too young to understand what cancer means. While it is true that children may not be able to grasp the complex medical information about the illness, they are able to understand a great deal more than they are given credit for, and using the word “cancer” gives them a way to distinguish their dying family member's illness from others such as the common cold or flu.
Cause
The second “C” arises from the common thought in children/youth that they somehow caused or hastened the death and/or prevented the recovery of their family member. Cause is one of the five accepted subconcepts of the developmental understanding of death8 and among the last to be mastered due to its complexity and abstract components. As she sat under her pink bunk-bed, 5-year-old Tayah told her counselor that she had cancer when she was a little girl and then her mother got it after her. Eleven-year-old Joshua shared, “I just have to get to that cancer walk thing. If I can do that, then my mom will get her cure. That is what they said on TV you know, to walk for the cure!”
There are a number of ways that children/youth may try to own responsibility for the illness and death of their family member. They may believe that things they thought or did not think, did or did not do, felt or did not feel were directly related to the cause, progression, or death of the family member.18 These thoughts are especially strong for children in the magical thinking stage of development. In Piaget's theory of cognitive development, magical thinking dominates the preoperational stage (2–7 years old) and describes thinking disconnected from the laws of nature.19 Special attention should be given to assuring children in this age group that they are in no way responsible for the illness or death of their family member, as well as to avoid minimizing these fears and beliefs of responsibility.[6] and [17] This point will need to be readdressed often, with frequent reassurance that they are not responsible.
Care
The third “C” includes concerns about what will become of them and who will take care of them as well as the desire to help care for the dying person. While it is commonly thought that this fear is felt more significantly by children/youth who have a dying or deceased parent, siblings of dying or deceased children appear to be just as challenged. They will experience the same break in their belief that their family member will always be with them.20 Also, many children worry that their surviving parent will be incapacitated and unable to care for them after the death. Four-year-old Alex looked up at his mom one night and said, “You are dying in front of me. I'm scared. Who is going to turn out the light, I can't reach it, and who will cook for me, I can't turn on the stove?” This fear extends beyond who will take over the practical parental roles, to the worry that the child or youth will be orphaned.
Children will often connect their own experience to what they have seen or heard and fear the worst.[18] and [21] Orphans are ever present in children's literature and movies and are often depicted as abandoned to fend for themselves. For many, this fear is grounded in the reality that their current caregiver may not have been emotionally able to address issues of custody or guardianship or that they do not have anyone willing or able to care for the kids after their death. As Alice lay on her bedroom floor writing notes to her dying mother in the critical care unit, she shared, “My mommy and my daddy are dying … they is both going to die,” convinced that this was the truth. Alice's dad is healthy and has been for all of Alice's life.
“Three Cs” and Adolescents
Occasionally, adults have questioned the relativity of the “Three Cs” to our adolescent (ages 13–18) population. Our clinical work has led us to conclude that indeed the “Three Cs” are very real in the lives of the youth we work with. An example of this in relation to “Catch” is Sarah, who expressed distress over the familial traits of breast cancer and the likelihood that her fate will one day mirror that of her mother, aunt, and grandmother.
With regard to “Cause,” we hear youth talk about the relationship between the quality of their caregiving efforts and the death of their family member. Many youth express a feeling that if they had done a better job caregiving, their family member would not have died, especially for youth in primary caregiving roles and single-parent homes.14
When looking at “Care,” youth are impacted by their ability to think abstractly and to experience the loss of what is yet to come. Youth understand that they depend on their caregivers for much more than their practical needs. Joshua talked to his counselor about the loss he was feeling as he searched for employment without his father's help and network. He shared, “If my Dad was here, he would know someone; he would know what I should do.” Important to note is that age is not always the best predictor of cognitive capacity as we see school-aged children grapple with many of the thoughts more commonly expressed by our older population.
Whether or not a caregiver has already spoken with a child about a diagnosis and prognosis, it is helpful to get him or her to consider what the child may be thinking about. Using the foundation of the “Three Cs” will help caregivers understand the importance of open, honest, and concrete communication, as well as feel better equipped to provide their child/youth with support.
Teaching Parents How to Communicate with Their Children
It is difficult for a parent to witness the reaction of a child/youth to such difficult information. This challenge cannot be questioned. However, the benefit to children/youth of having their parents lead or participate in communications and psychoeducation about the cancer and terminal prognosis is clear.[6], [7], [8] and [12] Caregivers are able to clarify assumptions and misperceptions while modeling that it is permissible to talk about cancer and dying together.
Medical staff can facilitate opportunities for such family communications by including children in family meetings and discussions with medical staff and by explaining complex concepts to family members in a simple, concrete fashion. Caregivers often need professionals to welcome and encourage the children to be included. Staff can reassure parents that although they may fear that their children's inclusion will be harmful, on the contrary, inclusion is helpful.
Getting Started
1 Ask what the child/youth understands about the disease/illness.
2 Fill in any gaps in their understanding and explain the treatments that were given.
3 Explain cancer treatments such as chemotherapy, radiation, and surgery.
4 Ask the child/youth what he or she thinks is going to happen.
5 Explain in terms that can be understood that the family member will die.
In any conversation with children/youth about such complex and consequential material, follow their lead in regard to the amount of detail they want. Conceptualize it as an onion: You will want to provide the child/youth with clear and simple language describing basic information. Beyond that, peel off subsequent layers as the child/youth requests more information, always using clear and concrete language. The child/youth may be uncomfortable with the material and may attempt to change the topic. This is a healthy coping mechanism; the average child is quite good at knowing when he or she has reached the limit of their emotional attention span. Allow the child to take the conversation in a different direction, periodically checking to see if he or she is ready to come back to the topic at hand. The benefit of starting this course of conversation early is that it allows children/youth the chance to receive information in small, digestible pieces and the time to process and integrate the information to begin to make meaning of it.
Summary
“What about the kids?” is a dominant and consuming question for caregivers supporting children/youth around the dying and death of a family member. The concerns and fears encompassed in this question can overwhelm caregivers as they put vast amounts of energy into trying to protect children/youth from the suffering and pain that awaits them. Perhaps the hardest lesson these caregivers must learn is that they cannot protect their child/youth from the death any more than they can stop the death from happening. Instead, what is needed most from children/youth is to be included, prepared, and provided with a safe place for emotional expression. Children, as well as adults, will grieve in their own specific way, mediated by their developmental level, circumstances of the illness and death, and protective factors available to them. Providing comprehensive, whole-person care to palliative patients with children/youth in their care ought to include psychoeducation and support for all members of the family. Our communities' bereaved children/youth will be impacted by the death of their family members in countless ways throughout their lives. As professionals caring for people who are dying, we have a responsibility to mediate this impact to the best of our ability.
References1
1 J. Bowlby, Pathological mourning and childhood mourning, J Am Psychoanal Assoc 11 (1963), pp. 500–541. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (48)
2 L. Dowdney, Annotation: childhood bereavement following parental death, J Child Psychol Psychiat 41 (7) (2000), pp. 819–830. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (68)
3 K. Kirwin and V. Hamrin, Decreasing the risk of complicated bereavement and future psych disorders in children, J Child Adolesc Psychiat Nurs 18 (2) (2005), pp. 62–78. View Record in Scopus | Cited By in Scopus (10)
4 L. Saler and N. Skoinick, Childhood parental death and depression in adulthood: roles of surviving parent and family environment, Am J Orthopsychiatry 62 (4) (1992), pp. 504–516. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (35)
5 G. Mireault and L. Bond, Parental death in childhood: perceived vulnerability, and adult depression and anxiety, Am J Orthopsychiatry 62 (4) (1992), pp. 517–524. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (28)
6 G. Christ and A. Christ, Current approaches to helping children cope with a parent's terminal illness, CA Cancer J Clin 56 (2006), pp. 197–212. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (13)
7 P.R. Silverman, Never Too Young to Know: Death in Children's Lives, Oxford University Press, New York (2000).
8 J.W. Warden, Children and Grief: When a Parent Dies, Guilford Press, New York (1996).
9 L. Dowdney, R. Wilson, B. Maughan, M. Allerton, P. Schofield and D. Skuse, Psychological disturbance and service provision in parentally bereaved children: prospective case–control study, BMJ 319 (7206) (1999), pp. 354–357. View Record in Scopus | Cited By in Scopus (25)
10 C. MacPherson, Telling children their ill parent is dying: a study of the factors influencing the well parent, Mortality 10 (2) (2005), pp. 113–120.
11 C. Eaton-Russell, Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers, Temmy Latner Centre for Palliative Care, Toronto (2007).
12 D. Black, Childhood bereavement: distress and long term sequelae can be lessened by early intervention, BMJ 312 (1996), p. 1496. View Record in Scopus | Cited By in Scopus (14)
13 S. Leighton, Bereavement therapy with adolescents—facilitating a process of spiritual growth, J Child Adolesc Psychiatr Nurs 21 (1) (2008), pp. 24–34. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (4)
14 T. Rando, Grief, Dying, and Death: Clinical Interventions for Caregivers, Research Press, Champaign, IL (1984).
15 J. Stokes, Anticipatory grief in families affected by HIV/AIDS, Prog Palliat Care 2 (1994), pp. 43–48.
16 C. Christ and S. Weisenfluh, Parent and child bereavement. In: D. Walsh, Editor, Palliative Medicine (1st ed.), Saunders, Philadelphia (2008).
17 L. Kroll, J. Barnes, A.L. Jones and A. Stein, Cancer in parents: telling children, BMJ 316 (1998), p. 880. View Record in Scopus | Cited By in Scopus (22)
18 J. Piaget, Piaget's theory. In: P. Mussen, Editor, Handbook of Child Psychology (4th ed.), John Wiley & Sons, New York (1970), pp. 703–732.
19 M. Van Riper, Death of a sibling: five sisters, five stories, Pediatr Nurs 23 (6) (1997), pp. 587–593.
20 F. Thompson and S. Payne, Bereaved children's questions to a doctor, Mortality 5 (1) (2000), pp. 74–96. Full Text via CrossRef
21 C.M. Burns, T.W. LeBlanc, A. Abernethy and D. Currow, Young caregivers in the end-of-life setting: a population-based profile of an emerging group, J Palliat Med 13 (10) (2010), pp. 1225–1235. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (0)
Children are too often the forgotten mourners in the homes of dying patients. Children, even young children, and youth grieve and mourn the threatened and, then, actual loss of a dying parent, sibling, or other significant family member.1 At a time when the family resources and focus are pulled away and taxed, caregivers are tasked with the difficult job of sorting through their own emotions and a wealth of advice. Caregivers must decide how they will communicate with, include, and support the children/youth in their care.
Although evidence is incomplete and there is a clear need for further studies, links between unresolved childhood grief, or an inability to adequately process their grief, and subsequent psychiatric conditions such as depression and anxiety have been presented as far back as Freud.[2], [3], [4] and [5] In addition, prevalent feelings of responsibility and exclusion and poor communication are consistently identified by researchers interviewing bereaved children/youth about their own experience over the last couple of decades.[6], [7] and [8] Therefore, given the risk of negative psychological and social outcomes associated with children's grief and the struggles communicated by children themselves, it is critical to recognize the important and preventive role of supportive interventions, especially prior to the death of a significant family member.
Looking at caregivers' experiences, there is still a large divide between the advice given by many family and friends in this situation (see Table 1) and what has become accepted within the palliative and grief counseling fields as “best practice.”[6], [7] and [8] In addition, family members' access to professionals trained or knowledgeable in this area is growing but usually still limited.9 Many children/youth are left uninformed, unprepared, and cut off from their family's support.
Table 1. Myths and Realities about Speaking to Children about Grief and Dying. Adapted from MacPherson C.10
Professionals are not immune to subscribing to the myths listed in Table 1 and “are often inhibited by their anxieties about saying or doing the wrong thing and causing lasting emotional damage.”10 However, by communicating openly and honestly and including children/youth, informed care team members can offer many supportive interventions that a family can benefit from during the time leading up to and following the death. These interventions foster the best outcomes when they are offered early on in the palliative trajectory.[11] and [12]
Our Setting
The Temmy Latner Centre for Palliative Care (TLCPC) at Mount Sinai Hospital in Toronto is one of Canada's largest academic palliative care programs, incorporating a children's center, the Max and Beatrice Wolfe Children's Centre, which provides pediatric palliative care and children's grief programs (Dr. Jay Children's Grief Program). Our children's center supports children, youth, and their families when a family member is dying or has died. This support includes Canada's first Camp Erin, an overnight children's grief camp. Children are referred to these programs for grief counseling by our center's palliative care physicians, local palliative care units and hospices, and a wide variety of community agencies. Children's grief programs are very limited in our large urban setting, as is true in most communities across North America. We have four counselors devoted to child and youth grief support services.
What We Do
Action 1: Intake and Assessment
The center has an open referral policy, accepting referrals from any source, including self-referrals, regardless of the nature of the illness or cause of death.
An intake phone call, lasting between 15 and 60 minutes, is made to the family to assess their needs and to provide psychoeducation and relevant resources. Based on our belief that early intervention provides the most supportive opportunities, families in which the patient is dying are prioritized.
As a result of demand for services being greater than our resources, children and their families bereaved at the time of referral are provided with an initial psychoeducational visit and assessment and then placed on a waiting list if further counseling is deemed appropriate.
In either case, the initial assessment often reveals that what the family needs most is psychoeducation about child/youth grief, communication and development, and reassurance about the benefits of the things they are already doing. Caregivers are provided with educational materials, including a copy of the center's publication Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers,11 a list of Web resources, books, and brochures written by us. All these resources are also available to professionals.
Action 2: Counseling
If further assessment and counseling are warranted, children are seen individually, with siblings and/or with their family depending on the needs and circumstances. The bulk of our counseling services are brief, typically lasting three or four sessions in total. However, more intensive counseling is available on a case-by-case basis, with progress and needs being assessed every four sessions. Counseling techniques including expressive arts, crafts, therapeutic play, and activities are used to support children/youth and families in the grieving process. Families are able to contact counselors when issues arise for them, which often occurs around anniversaries, holidays, other important events, and as children/youth develop and experience their grief in a new light.13
The center's model is resiliency-based, nonpathological, and family-centered. Caregivers are empowered as primary and ongoing sources of support and dominant role models for the grieving child and youth in their care. In addition to conversations with their counselor, families are offered monthly opportunities forcaregiver education and peer support and various therapeutic group activities for children/youth.
Action 3: Complex Cases
Referrals to secondary children's mental health services are facilitated for families with needs beyond the scope of our supportive grief services, including children with indicators of complicated grief who need more intensive counseling. For children with severe psychological distress, referrals are made to a pediatric psychiatrist with special interest in this area.
According to Rando,14 there are a number of forms of unresolved or complicated grief which can overlap, and each has components of denial or regression. These include feelings of grief and mourning being absent, an inhibition of some of the normal symptoms of grief, putting grief on hold for any reason, and when there is a dependent or ambivalent relationship with the deceased. Two common manifestations are extreme anger and extreme guilt.
Some types of death that place children/youth at risk for complicated grief include a sudden or unexpected death, a violent death, a death involving mutilation, the death of a child, and death as the result of a prolonged illness. Also included is complicated loss associated with social stigma such as imprisonment, suicide, AIDS, abortion, severe mental illness, serious family dysfunction, or addiction. However, the presence of these factors does not necessarily lead to complicated grief. Complicated loss is known to be mediated by personal, familial, and social factors that contribute to relative risk and resilience.
What We Say
Engaging a family early in the palliative journey allows greater opportunity to prepare children/youth and prevent possible negative outcomes.[6] and [15] Christ and Weisenfluh16 tell us that the greatest need for support is found during the weeks leading up to the death. A large component of the early intervention we offer is age-appropriate psychoeducation to help caregivers conceptualize how their child/youth may be experiencing and understanding what is happening. Caregivers who anticipate some of the thoughts, feelings, questions, and struggles that their child/youth might face are empowered and children benefit.
The 3 Cs
1. Can I catch it?
2. Did I cause it?
3. Who is going to take care of me?
Julie Stokes15 was able to summarize what children/youth think and worry about most when a family member is dying into three questions. We have coined these three questions the “Three Cs”: Catch, Cause, and Care.
Catch
The first “C” relates to the fear expressed by children/youth that they could catch the illness. Melanie, a 7-year-old, explained that she would have a brain tumor soon because her sister Sarah, who was dying of brain cancer at the time, “is my sister and we lived in the same room always.” If such concerns go unexplored and children are not given clear information, caregivers may see children/youth distance themselves from their ill family member, develop a fear that they and the rest of their family will get sick and die as well, and other implications.17
The weight of language in a child's understanding of illness, death, and dying cannot be emphasized enough.11 More often than not, indirect and generic language used by adults, such as referring to someone as being “sick” or “not doing well,” complicates a child's ability to differentiate between the common cold or flu and life-threatening diseases and illnesses. “My mom was sick and she died; therefore, all people that are sick die.” Many adults believe that their child is too young to understand what cancer means. While it is true that children may not be able to grasp the complex medical information about the illness, they are able to understand a great deal more than they are given credit for, and using the word “cancer” gives them a way to distinguish their dying family member's illness from others such as the common cold or flu.
Cause
The second “C” arises from the common thought in children/youth that they somehow caused or hastened the death and/or prevented the recovery of their family member. Cause is one of the five accepted subconcepts of the developmental understanding of death8 and among the last to be mastered due to its complexity and abstract components. As she sat under her pink bunk-bed, 5-year-old Tayah told her counselor that she had cancer when she was a little girl and then her mother got it after her. Eleven-year-old Joshua shared, “I just have to get to that cancer walk thing. If I can do that, then my mom will get her cure. That is what they said on TV you know, to walk for the cure!”
There are a number of ways that children/youth may try to own responsibility for the illness and death of their family member. They may believe that things they thought or did not think, did or did not do, felt or did not feel were directly related to the cause, progression, or death of the family member.18 These thoughts are especially strong for children in the magical thinking stage of development. In Piaget's theory of cognitive development, magical thinking dominates the preoperational stage (2–7 years old) and describes thinking disconnected from the laws of nature.19 Special attention should be given to assuring children in this age group that they are in no way responsible for the illness or death of their family member, as well as to avoid minimizing these fears and beliefs of responsibility.[6] and [17] This point will need to be readdressed often, with frequent reassurance that they are not responsible.
Care
The third “C” includes concerns about what will become of them and who will take care of them as well as the desire to help care for the dying person. While it is commonly thought that this fear is felt more significantly by children/youth who have a dying or deceased parent, siblings of dying or deceased children appear to be just as challenged. They will experience the same break in their belief that their family member will always be with them.20 Also, many children worry that their surviving parent will be incapacitated and unable to care for them after the death. Four-year-old Alex looked up at his mom one night and said, “You are dying in front of me. I'm scared. Who is going to turn out the light, I can't reach it, and who will cook for me, I can't turn on the stove?” This fear extends beyond who will take over the practical parental roles, to the worry that the child or youth will be orphaned.
Children will often connect their own experience to what they have seen or heard and fear the worst.[18] and [21] Orphans are ever present in children's literature and movies and are often depicted as abandoned to fend for themselves. For many, this fear is grounded in the reality that their current caregiver may not have been emotionally able to address issues of custody or guardianship or that they do not have anyone willing or able to care for the kids after their death. As Alice lay on her bedroom floor writing notes to her dying mother in the critical care unit, she shared, “My mommy and my daddy are dying … they is both going to die,” convinced that this was the truth. Alice's dad is healthy and has been for all of Alice's life.
“Three Cs” and Adolescents
Occasionally, adults have questioned the relativity of the “Three Cs” to our adolescent (ages 13–18) population. Our clinical work has led us to conclude that indeed the “Three Cs” are very real in the lives of the youth we work with. An example of this in relation to “Catch” is Sarah, who expressed distress over the familial traits of breast cancer and the likelihood that her fate will one day mirror that of her mother, aunt, and grandmother.
With regard to “Cause,” we hear youth talk about the relationship between the quality of their caregiving efforts and the death of their family member. Many youth express a feeling that if they had done a better job caregiving, their family member would not have died, especially for youth in primary caregiving roles and single-parent homes.14
When looking at “Care,” youth are impacted by their ability to think abstractly and to experience the loss of what is yet to come. Youth understand that they depend on their caregivers for much more than their practical needs. Joshua talked to his counselor about the loss he was feeling as he searched for employment without his father's help and network. He shared, “If my Dad was here, he would know someone; he would know what I should do.” Important to note is that age is not always the best predictor of cognitive capacity as we see school-aged children grapple with many of the thoughts more commonly expressed by our older population.
Whether or not a caregiver has already spoken with a child about a diagnosis and prognosis, it is helpful to get him or her to consider what the child may be thinking about. Using the foundation of the “Three Cs” will help caregivers understand the importance of open, honest, and concrete communication, as well as feel better equipped to provide their child/youth with support.
Teaching Parents How to Communicate with Their Children
It is difficult for a parent to witness the reaction of a child/youth to such difficult information. This challenge cannot be questioned. However, the benefit to children/youth of having their parents lead or participate in communications and psychoeducation about the cancer and terminal prognosis is clear.[6], [7], [8] and [12] Caregivers are able to clarify assumptions and misperceptions while modeling that it is permissible to talk about cancer and dying together.
Medical staff can facilitate opportunities for such family communications by including children in family meetings and discussions with medical staff and by explaining complex concepts to family members in a simple, concrete fashion. Caregivers often need professionals to welcome and encourage the children to be included. Staff can reassure parents that although they may fear that their children's inclusion will be harmful, on the contrary, inclusion is helpful.
Getting Started
1 Ask what the child/youth understands about the disease/illness.
2 Fill in any gaps in their understanding and explain the treatments that were given.
3 Explain cancer treatments such as chemotherapy, radiation, and surgery.
4 Ask the child/youth what he or she thinks is going to happen.
5 Explain in terms that can be understood that the family member will die.
In any conversation with children/youth about such complex and consequential material, follow their lead in regard to the amount of detail they want. Conceptualize it as an onion: You will want to provide the child/youth with clear and simple language describing basic information. Beyond that, peel off subsequent layers as the child/youth requests more information, always using clear and concrete language. The child/youth may be uncomfortable with the material and may attempt to change the topic. This is a healthy coping mechanism; the average child is quite good at knowing when he or she has reached the limit of their emotional attention span. Allow the child to take the conversation in a different direction, periodically checking to see if he or she is ready to come back to the topic at hand. The benefit of starting this course of conversation early is that it allows children/youth the chance to receive information in small, digestible pieces and the time to process and integrate the information to begin to make meaning of it.
Summary
“What about the kids?” is a dominant and consuming question for caregivers supporting children/youth around the dying and death of a family member. The concerns and fears encompassed in this question can overwhelm caregivers as they put vast amounts of energy into trying to protect children/youth from the suffering and pain that awaits them. Perhaps the hardest lesson these caregivers must learn is that they cannot protect their child/youth from the death any more than they can stop the death from happening. Instead, what is needed most from children/youth is to be included, prepared, and provided with a safe place for emotional expression. Children, as well as adults, will grieve in their own specific way, mediated by their developmental level, circumstances of the illness and death, and protective factors available to them. Providing comprehensive, whole-person care to palliative patients with children/youth in their care ought to include psychoeducation and support for all members of the family. Our communities' bereaved children/youth will be impacted by the death of their family members in countless ways throughout their lives. As professionals caring for people who are dying, we have a responsibility to mediate this impact to the best of our ability.
References1
1 J. Bowlby, Pathological mourning and childhood mourning, J Am Psychoanal Assoc 11 (1963), pp. 500–541. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (48)
2 L. Dowdney, Annotation: childhood bereavement following parental death, J Child Psychol Psychiat 41 (7) (2000), pp. 819–830. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (68)
3 K. Kirwin and V. Hamrin, Decreasing the risk of complicated bereavement and future psych disorders in children, J Child Adolesc Psychiat Nurs 18 (2) (2005), pp. 62–78. View Record in Scopus | Cited By in Scopus (10)
4 L. Saler and N. Skoinick, Childhood parental death and depression in adulthood: roles of surviving parent and family environment, Am J Orthopsychiatry 62 (4) (1992), pp. 504–516. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (35)
5 G. Mireault and L. Bond, Parental death in childhood: perceived vulnerability, and adult depression and anxiety, Am J Orthopsychiatry 62 (4) (1992), pp. 517–524. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (28)
6 G. Christ and A. Christ, Current approaches to helping children cope with a parent's terminal illness, CA Cancer J Clin 56 (2006), pp. 197–212. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (13)
7 P.R. Silverman, Never Too Young to Know: Death in Children's Lives, Oxford University Press, New York (2000).
8 J.W. Warden, Children and Grief: When a Parent Dies, Guilford Press, New York (1996).
9 L. Dowdney, R. Wilson, B. Maughan, M. Allerton, P. Schofield and D. Skuse, Psychological disturbance and service provision in parentally bereaved children: prospective case–control study, BMJ 319 (7206) (1999), pp. 354–357. View Record in Scopus | Cited By in Scopus (25)
10 C. MacPherson, Telling children their ill parent is dying: a study of the factors influencing the well parent, Mortality 10 (2) (2005), pp. 113–120.
11 C. Eaton-Russell, Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers, Temmy Latner Centre for Palliative Care, Toronto (2007).
12 D. Black, Childhood bereavement: distress and long term sequelae can be lessened by early intervention, BMJ 312 (1996), p. 1496. View Record in Scopus | Cited By in Scopus (14)
13 S. Leighton, Bereavement therapy with adolescents—facilitating a process of spiritual growth, J Child Adolesc Psychiatr Nurs 21 (1) (2008), pp. 24–34. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (4)
14 T. Rando, Grief, Dying, and Death: Clinical Interventions for Caregivers, Research Press, Champaign, IL (1984).
15 J. Stokes, Anticipatory grief in families affected by HIV/AIDS, Prog Palliat Care 2 (1994), pp. 43–48.
16 C. Christ and S. Weisenfluh, Parent and child bereavement. In: D. Walsh, Editor, Palliative Medicine (1st ed.), Saunders, Philadelphia (2008).
17 L. Kroll, J. Barnes, A.L. Jones and A. Stein, Cancer in parents: telling children, BMJ 316 (1998), p. 880. View Record in Scopus | Cited By in Scopus (22)
18 J. Piaget, Piaget's theory. In: P. Mussen, Editor, Handbook of Child Psychology (4th ed.), John Wiley & Sons, New York (1970), pp. 703–732.
19 M. Van Riper, Death of a sibling: five sisters, five stories, Pediatr Nurs 23 (6) (1997), pp. 587–593.
20 F. Thompson and S. Payne, Bereaved children's questions to a doctor, Mortality 5 (1) (2000), pp. 74–96. Full Text via CrossRef
21 C.M. Burns, T.W. LeBlanc, A. Abernethy and D. Currow, Young caregivers in the end-of-life setting: a population-based profile of an emerging group, J Palliat Med 13 (10) (2010), pp. 1225–1235. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (0)