Children bereaved by parent or sibling death

Children bereaved by parent or sibling death

BEREAVEMENT Children bereaved by parent or sibling death in verbalizing feelings. Children’s intellectual curiosity which can lead to persistent que...

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BEREAVEMENT

Children bereaved by parent or sibling death

in verbalizing feelings. Children’s intellectual curiosity which can lead to persistent questioning about death unaccompanied by expressions of loss may distress grieving adults. Preschool children do have a sense of loss when a parent or sibling dies, and may actively search for them. Their sense of loss will be compounded by major changes to their routine and the grief of those around them. They can show regression in developmental milestones, increased dependency, crying and distress can be evoked by minor upsets, and relationships with other children can be disrupted by unexpected expressions of anger or aggression.

Linda Dowdney

Children grieve following the death of a parent or sibling. Their reports of grief-related feelings and behaviour are similar in many respects to those expressed by grieving adults. Children report shock, confusion and disbelief at learning of the death. Subsequently they experience sadness, a longing for the dead person to return, concentration difficulties, sleeping and eating difficulties, and anger.1 Children express grief differently according to their understanding of death and their developmental level – which can confuse those caring for them.

Middle childhood: with an improvement in verbal abilities, bereaved children can begin to express their fears – for example, about going to sleep. There may be difficulties going off to sleep in 5- to 7-year-olds, while older children report sleep disturbed by nightmares. Parents report their bereaved children up to the age of 12 years have difficulty sleeping, unless near an attachment figure. Dreams are not always negative, however, and many children say that dreaming about their parent is comforting.1 From about 8 years of age, children report an increase in headaches and other physical manifestations of distress. They may find it hard to concentrate at school. Children’s questions about death can reflect curiosity or underlying anxieties about their ‘responsibility’ for the death. Once children realize that their questions distress grieving adults, they attempt to protect them by not asking questions. This carries the risk that children’s misconceptions will continue unchallenged. The death of a parent or sibling challenges children’s beliefs that death is a manifestation of old age, and the separation anxiety that young children can evince, causes worries in middle childhood about the vulnerability of other family members.

Concepts of death Prior to the age of 7 years, children are unlikely to understand the irreversibility of death leading to repeated questions about their parent or sibling’s return. They believe that their own thoughts or behaviour can cause or reverse death. Concepts such as ‘heaven’ and ‘spirit’ will be difficult to grasp. By 9 years of age, children understand the universality and permanence of death, but continue to wish for the return of their sibling or parent. They believe they could have influenced events leading up to their death. Until children fully grasp, around the age of 11 years, that death equates to a full cessation of bodily function, they will have anxieties about the loneliness, hunger and cold of the dead person. Even at this stage, they actively imagine an afterlife in which their family member behaves in much the same way as when alive: eating, drinking and enjoying their favourite pastimes. Adolescents pose questions about the unfairness of death and the meaning of life.2 Children who are particularly able in their cognitive and verbal abilities will grasp the concept of death more quickly. Even children as young as 8 years old will understand the permanence of death if they have known a person who has died.

Adolescents report a similar range of feelings to younger children, and they express them in a variety of ways. They may withdraw from family activities, and/or seek support from peers. Death leads bereaved adolescents to question the meaning of life. Some challenge their own mortality with risk-taking behaviours such as drinking or taking drugs.3 Adolescents have the cognitive capacity to review the past and contemplate the longer-term consequences of death. Their ability to recall and review the relationship with the deceased, can be a source of comfort. Alternatively, where there is guilt or regret for past behaviour towards the parent or sibling, they can become more distressed. At a time of approaching individuation, parental or sibling death can charge the adolescent with new family roles and responsibilities, and expectations of adult-like behaviour. Their sense of responsibility and desire to protect grieving adults can lead to a disguised grief which results in mixed messages to those around them.

Developmental trends in children’s expressions of grief Bereaved children and adolescents have a capacity for distracting themselves through activities such as play or social activities, which causes some adults to question whether they are truly grieving. This uncertainty is compounded by children’s difficulties

Grief symptoms in bereaved children start attenuating within 4 months post death. Generally, these symptoms do not interfere with children’s overall functioning, although emotional and behavioural disturbance in bereaved children can persist for up to 12 months.4 While the death of a parent changes a child’s life path irrevocably, grieving children can also respond in positive ways to bereavement, with an increase in independence, a determination to do better at school, and a heightened capacity to understand the distress of others.4 Some adolescents report an increased appreciation of family relationships and also a growth in spirituality.

Linda Dowdney is a Consultant Clinical Psychologist who has worked clinically, and also undertaken research, with bereaved children. Until recently, she was course director of the PsychD Clinical Psychology training programme at the University of Surrey, UK.

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these matters can affect the distress children express. By contrast, the age and sex of the child do influence clinical outcomes. Younger children more often show behavioural or anxiety problems, while dysphoria or depression are more common in adolescents who can show the profound sadness, appetite and sleep difficulties found in adult bereavement. Generally, boys exhibit higher rates of overall difficulties and acting out/aggressive behaviours than girls who are more likely to show sleep disturbance, bedwetting and depressive symptoms. Research evidence suggests that mental health difficulties in either parents or children prior to bereavement may increase vulnerability to disturbance post bereavement. Parental mental health difficulties after the death are more clearly seen to influence child outcome. Parents, teachers and children concur in reporting higher rates of child depression, conduct disorder, anxiety and somatic symptoms, when parents report they are experiencing mental health difficulties. This suggests an enhanced risk for children when parental difficulties limit the support they can give.4 Families vary in the ways in which they organize themselves, how they talk together and share family tasks. These patterns influence how grief is expressed and the type of role changes necessary following a parental or sibling death.10 However, there is no strong evidence that normal variations in family life influence the development of child pathology. There are some indications that prior marital conflict, separations and divorce can increase the risk of child disturbance. There is difficulty assessing the importance of these factors because information on them is provided retrospectively by bereaved parents whose memories may be affected by their grief and distress. Also, there may be genetic influences upon child outcome when pre-existing psychiatric morbidity is found in family members.11 Childhood resilience remains largely unexplored in bereavement studies, in spite of its potential importance for prevention and intervention.

Morbidity in bereaved children Distress does not equal pathology.5,6 The proportion of bereaved children showing disorders of clinical significance varies from study to study depending on inclusion/exclusion criteria, recruitment practices and measures used. In general, children report more symptoms than their parents do of them. Inevitably, studies including referred children show the highest rates of disorder with as many as two-thirds showing clinical dysthymia (persistent mild depression). However, data from the best controlled studies of bereaved children, indicate that only one in five bereaved children will show disturbance at a level warranting clinical referral.4 Studies generally agree on the symptoms shown by bereaved children, with dysphoria (a state of unease) being frequently found. Clinicians and researchers find that many children report a wish to be dead. While this needs careful exploration, for many bereaved children this reflects a desire to be with the deceased rather than a wish to end their own life. Children infrequently develop anxiety or somatizing disorders, although headaches and stomach aches increase and anxieties about separation are common. In general, disturbance is nonspecific, taking the form of a marked heightening in the frequency and persistence of grief symptoms – crying, sadness, guilt, anger, behavioural acting out, and despair.4,7 Children bereaved by familial murder or suicide form a high-risk group, with as many as 63% reporting internalizing symptoms of probable clinical severity.8 Post-traumatic stress symptoms are commonly reported and make bereavement more problematic as protectiveness towards other traumatized family members can inhibit support seeking and family communication.9 While traumatic symptoms usually attenuate within the first few weeks or months, guilt, stigma or shame, and anger are more persistent in children bereaved by murder or suicide.3 Traumatic bereavement: most recently, ‘traumatic bereavement’ has emerged as a putative clinical disorder in a sub-group of children.3 This differs from grief accompanied by post-traumatic stress disorder, because trauma symptoms persist for lengthy periods and are not merely aroused by reminders of traumatic events. Extreme symptoms of heightened arousal and distress are evoked by even positive reminders of the dead person, or by referral to life changes that have followed the death. The result is an emotional numbing and avoidance of any reminders of the dead person or the death. It is their refusal to participate in mourning rituals, such as memorial services at school, their continued refusal to talk of the deceased even when the family is remembering happy times, or their withdrawal from family life or peer relationships, which leads parents to seek help. It is unclear why some children respond in this way, as present understanding does not suggest a prior vulnerability or attachment difficulties.3

Interventions with bereaved children Theory, culture and intervention Two theoretical models have particularly influenced interventions with bereaved children: those of Bowlby and Worden.12,13 Bowlby describes child grief as a process spanning an initial disbelief in the parent’s death, a yearning for them accompanied by a sense of their presence, and distress as the permanence of the loss is realized. Grief is appropriately resolved when the child accepts the death, emotionally separates from the deceased, resumes their developmental trajectory and forms satisfactory new relationships. Whether children negotiate this process satisfactorily will be influenced by the quality of their prior and current attachment relationships. Worden, in his description of adult bereavement portrayed the grief process as a series of tasks that the mourner needs to accomplish in order for grief to be resolved. Worden’s model has been adapted and applied to bereaved children.14 The tasks that bereaved children have to complete include: gaining an understanding of how the death occurred; accepting the pain and permanence of loss, tolerating mixed feelings such as sadness and anger; renegotiating the relationship with the deceased so that a positive internal image and psychological connection is maintained; forming a new identity that reflects role changes, and finding new and supportive relationships. Both theorists recognize the importance of family relationships, share an emphasis

What influences child morbidity? Studying bereaved children is difficult as they are hard to find and access. Consequently, there is little systematic exploration of variables that might influence child morbidity. Research evidence suggests children’s involvement in mourning rites, whether the death was expected or unexpected, and whether it was the mother or father who died, does not influence child pathology, even though

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What is helpful for parents? Dealing with grief-stricken children along with their own distress falls outside the usual repertoire of parenting skills. Therefore, parents can hesitate about what and when to tell children, and to what extent to involve them in mourning rituals. An opportunity to discuss their concerns and potential responses with an understanding and supportive adult is often all that parents require. Given that unexpected deaths require decisions to be made quickly by unprepared parents, it is important to convey to them that there are a number of ways to handle children’s involvement and grief – and that subsequently there will be ways to address decisions they come to regret. For example, if children did not attend the funeral, the service can be described, they can visit the church or graveyard, and hear of positive things said about the dead person. Explanations about different forms of childhood grief can help confused parents who are uncertain about what is normal in these circumstances. If parents express concerns about their children neither crying, nor apparently grieving, it can be suggested that encouraging children to join in when the family remembers or talks about their dead parent or sibling can be a valuable way of grieving.1 Many families naturally provide the child with mementoes of the dead person. These act as comforters initially, and over time help children maintain a relationship with the dead person. Schools are potentially important sources of support, although unfortunately teaching about death is not part of the normal curriculum and teachers can feel unprepared to deal with grieving children.

on the inner world of the child, and see grief as a process requiring satisfactory resolution. Both Bowlby’s and Worden’s models guide recent interventions with children at high risk for disorder following bereavement.15 More recent theorists recognize that beliefs about death, and the expression of grief, vary according to social and political structures and, even within one culture, vary over time.16 It is now recognized, for example, that continuing to think about, ‘talking’ with, or ‘seeing’ the deceased is not necessarily pathological as previously supposed. Rather, sustaining a relationship with the dead person, which changes as the child matures, is an important part of the child’s subsequent emotional development.17 Where children are from a different cultural background from the therapist, it is important to gain an understanding of culturally relevant beliefs and practices. Therapists need to consider, too, how their own intervention practice is influenced by western conceptualizations of appropriate grief. Many community-based interventions with bereaved children aim to help them express their distress, share their feelings and ‘work through’ their grief. Yet, how should the aims of bereavement work be modified when working with families whose religion asserts that sorrow should be contained, and where the expression of sorrow will bring social opprobrium? Studies reporting interventions with groups of bereaved children do not address therapeutic dilemmas of this kind, and fail to explain how the standard therapeutic approach in this area should be modified to take account of widely different beliefs. Systemic theories of family functioning do not provide a theory of bereavement as such. However, by recognizing that the child can be understood only within the context of their family, culture and ethnic background, systemic therapists offer a useful perspective for working with bereaved children.10

Services for bereaved children: there has been a recent marked expansion in community-based services for bereaved children.18 These offer individual and group work with children both with and without their families, and consultation to other agencies. The rationale for such services is that distressed adults cannot always support grieving children; that children need to be recognized as mourners; that they benefit from peer support and a facilitated grief process, and help now will prevent later problems. Quantitative evaluations of such interventions suggest that we should be cautious about their effectiveness, as the best controlled studies show few effects.2,7 Difficulties in demonstrating effectiveness may be due partly to the fact that it is not the level of child or parental distress which determines who receives services.7 Unless the neediest are included, then room for change may be limited. Also, measures of change need to match the aims of the intervention – a decline in grief symptoms, for instance, rather than measures of child disturbance. However, as bereaved children are a potentially vulnerable population, it is important to remember that interventions are not neutral and have not always been shown to be helpful. Also, they do not often assess whether negative outcomes, such as an increase in distress, occur.19

What do bereaved children need? Theoretical perspectives combined with clinical experience, inform current understanding of what helps bereaved children. It is important to provide children with accurate information about the death and related events, along with reassurances that they could not have changed or influenced either. Together with reassurances that death mostly affects elderly people, these explanations can address guilt-laden misunderstanding as well as worries and anxieties about who might die next. Surprisingly, many children are kept ignorant of why death occurred – over a quarter of the children in our study had not been told how their parent had died.7 Explanations need to be age appropriate, clear, simple and truthful. They may need repetition to aid understanding and to address new questions as children develop emotionally and cognitively. Euphemisms such as ‘gone to sleep’ carry obvious risks for young children who interpret them literally. Reassurance from familiar adults can address practical anxieties about routines and caretaking. Continuities in routines will be important for younger children, and if these can include positive experiences, so much the better. Recognizing, normalizing and discussing their grief and concerns, provides children with a sense that death can be managed and need not overwhelm them. Involving children as fully as possible in arrangements related to the death – for example, attending the funeral and asking what kind of flowers they think the dead person would have wanted on their grave, are helpful. It recognizes the impact the death has had on them, and gives them a sense of inclusion in the family’s expression of grief.

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The role of professionals: the majority of bereaved children need neither professional intervention nor therapy. Concerned caregivers benefit from basic psycho-education on children’s grief. This can help normalize children’s behaviour and reassure parents anxious about how to manage their children. Widening the support networks available to both parents and children can aid distressed parents. This may require a consultation to the school, or reassurance to parents that the responsibility for managing the child’s grief can be shared with other relatives, or another trusted sympathetic adult. Simply giving children a chance to talk within 120

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Bereaved children: assessing the need for support and intervention Time Pre-death

Death occurs

Immediate aftermath

Short-term (< 4 months)

Longer-term

Context: implications for management Children: Developmental level Understanding of death Temperament Relationship with deceased Prior history of loss/divorce/death Prior disturbance/disorder Family: Patterns of communication Organization Role differentiation Quality of relationships Prior parental mental health problems Culture/religion/community: Beliefs – meaning of life/death – relationships with the dead – roles of adults/children/family Behaviour – culturally appropriate rituals – appropriate expressions of grief Nature/circumstances of death: Traumatic/murder/suicide Presence of child Information provided Adults available to child Degree of support available Children: Impact upon routines/ care Suitability of substitute care Involvement in rites/rituals Expression of grief tolerated Opportunities to gain understanding Family: Explanations given to child Availability of support for all the family Support for expression of grief Appreciates child’s needs Extended family – involvement with child – conflict around death/aftermath Children: Degree routines re-established Ability to use support Type of grief symptoms Opportunities to express grief Level of distress/avoidance Increasing understanding Lack of stability/ further losses Family: High level of distress Lack of support for adults Children: Persistence of marked distress Persistent trauma symptoms Difficulties in peer relationships Family: Mental health difficulties Marked relationship difficulties

Post-death Advise/consult with professional

Monitor If learning disabilities

Consider referral?

Liaise with school

If problematic Yes Yes

If poor/prior disturbance Yes

Practical obstacles to/ community support for

Consider support from/liaison with cultural community

Yes

Yes

If unsuitable care over long term If requested

Psychoeducation on grief

Yes Absence from school

If prolonged – family/school liaison

If persists

If signs of trauma

Psychoeducation – monitor

If severe

Yes, if marked

Psychoeducation – monitor

Yes

Family/school liaison – monitor Assess help needed/given Consider ways of increasing

If a problem

Psychoeducation/increase support School liaison

If a problem Yes Yes, if persists

Asses help given/needed/wanted Assess help given/needed/wanted

Yes, if persists Yes, if persists

1

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the family about what they are thinking or feeling, or giving them physical comfort when they are distressed, is experienced as helpful as retrospective studies of bereaved adolescents and young adults have shown.1 Referral is appropriate where there is prolonged distress or disorder. Practitioners will find much in their current practice appropriate for assessment and treatment of bereaved children’s distress or disturbance. However, clinicians must feel comfortable with enquiring in detail about events that the family may find painful and distressing. In order to know how best to intervene, it is essential to gain a detailed understanding of the circumstances of the death, how and under what conditions the child was informed, what explanations have been given to the child, and what are the relevant cultural or religious variables. Discussions about these matters, can quickly identify areas of difficulty, differences of opinion, and tensions with the extended family or other agencies such as schools, that have an impact upon the child. Seeing the child and parents together and separately is useful. An initial interview with parents elicits what they think the child knows, and whether new information can be shared. Individual discussions with children can highlight hidden worries, misunderstandings, cognitive distortions, self-blame and guilt, or symptoms of trauma. Non-verbal methods of communication, such as play or drawing, are extremely useful with young children as they offer concrete ways of conveying important events and feelings. Seeing parents and children together can highlight important family processes such as the extent to which beliefs are shared, differing perspectives and reactions to events, and the parental management of child distress. Cognitive–behavioural interventions with bereaved children and their parents have been shown to effect significant improvements in depression and anxiety, post-traumatic stress symptoms and reduction in symptoms of complicated grief.15 Reducing children’s symptoms of trauma has been shown to reduce also their griefrelated distress, though additional bereavement-focused work can be useful when distress continues.

psychoeducation about the potential impact of trauma helps to normalize traumatic stress symptoms and the grief process. When grief and trauma symptoms disrupt normal functioning and persist over time, then referral for professional help is appropriate. It is essential to consider the impact of religious and cultural beliefs upon presentation and the implications of these for appropriate therapeutic goals and practice. 

REFERENCES 1 Silverman P R, Worden J W. Children’s reactions in the early months after the death of a parent. Am J Orthopsychiatry 1992; 62: 93–104. 2 Balk D E. Models for understanding adolescent coping with bereavement. Death Studies 1996; 20: 367–87. 3 Cohen J A, Mannarino A P, Greenberg T, Padlo S, Shipley C. Childhood traumatic grief: concepts and controversies. Trauma Violence Abuse 2002; 3: 307–27. 4 Dowdney L. Annotation: childhood bereavement following parental death. J Child Psychol Psychiat 2000; 7: 819–30. 5 Harrington R. Childhood bereavement: bereavement is painful but does not necessarily make children ill. BMJ 1996; 313: 822. 6 Bonanno G A. New directions in bereavement research and theory. Am Behav Scientist 2001; 44: 718–25. 7 Dowdney L, Wilson R, Maughan B, Allerton M, Schofield P, Skuse D. Bereaved children: psychological disturbance and service provision. BMJ 1999; 319: 354–7. 8 Pfeffer C R, Martins P, Mann J et al. Child survivors of suicide: psychosocial characteristics. J Am Acad Child Adolesc Psychiatry 1997; 36: 65–74. 9 Freeman L N, Shaffer D, Smith H. Neglected victims of homicide: the needs of young siblings of murder victims. Am J Orthopsychiatry 1996; 66: 337–45. 10 Sutcliffe P, Tufnell G, Cornish U. Working with the dying and bereaved: systemic approaches to therapeutic work. London: Macmillan Press, 1998. 11 Brent D A, Bridge J, Johnson B A, Connolly J. Suicidal behavior runs in families. A controlled family study of adolescent suicide victims. Arch Gen Psychiatry 1996; 53: 1145–52. 12 Bowlby J. Attachment and loss. Vol. 2. In Separation: anxiety and anger. London: Hogarth Press, 1973. 13 Worden J W. Grief counselling & grief therapy. London: Tavistock Publications, 1986. 14 Baker J E, Sedney M A, Gross E. Psychological tasks for bereaved children. Am J Orthopsychiatry 1992; 62: 105–16. 15 Cohen J A, Mannarino A P, Knudsen K. Treating traumatic grief: a pilot study. J Am Acad Child Adolesc Psychiatry 2004; 43: 1225–33. 16 Klass D, Goss D. The politics of grief and continuing bonds with the dead: the cases of maoist China and Wahhabi Islam. Death Studies 2003; 27: 787–811. 17 Worden J W. Children and grief: when a parent dies. New York: Guilford, 1996. 18 Rolls L, Payne S. Childhood bereavement services: a survey of UK provision. Palliative Med 2003; 17: 423–32. 19 Curtis K, Newman T. Do community-based support services benefit bereaved children? A review of empirical evidence. Child Care Health Dev 2001; 27: 487–95.

Conclusion Grieving children describe grief symptoms similar to those of adults, with the expression of their grief being influenced by their age, verbal and cognitive abilities, and their understanding of death. Their natural coping skills include distraction and diversion, which can be confusing to adults as children appear to dip in and out of grief. Distress is normal following loss, and does not indicate pathology. Heightened anxiety about separations from attachment figures is evident across all age groups. Most children show resilience in response to loss. Approximately, 1 in 5 children will develop psychiatric disorder following bereavement, although those bereaved by murder or suicide are at particular risk. The majority of families do not require psychological services, although there is a role for professionals in providing consultation to other agencies, such as schools, who are in touch with bereaved families. Parents are appreciative of information about children’s grief, and advice and reassurance about their management. Broadening the understanding of childhood grief for those who are routinely in touch with children, such as teachers, would enhance children’s supportive community social networks. For high-risk groups, and those in routine contact with them following the death,

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