6.2 Talking with families and children about the death of a parent

Parental death is one of the most significant and stressful events children can encounter (Auman, 2007), one that could have a serious impact on adulthood. While no routine data is collected in the United Kingdom on this group, estimates suggests that over 24 000 children and young adults experience the death of a parent each year in the United Kingdom (Winston’s Wish, n.d.). However, data may well reflect only those exhibiting some problem with their grief and may be underinflated (Thompson and Payne, 2000). A recent study (Parsons, 2011) found that 5% of young people have been bereaved of a parent by the time they are 16. For the majority of children, parents are the most significant people in their lives, so when one dies, life as the child knows it is disrupted and irrevocably changed. It is a time of suffering and confusion, both for the child and surviving parent. For diagnostic understanding, it is necessary that clinicians evaluate if the reaction is a part of ‘normal life’ or if it needs any type of specific intervention.

The parent’s palliative stage of an illness exposes the child to significant levels of stress (Thastum et al., 2008; Kennedy and Lloyd-Williams, 2009a, 2009b) and yet there are limited resources available to this community of children (Lloyd-Williams et al., 1998; Dunning, 2006). Furthermore, these stress-related feelings are exacerbated because the non-bereaved community do not understand the loss or the associated pain which causes the bereaved to feel isolated and alone (Schultz, 2007).

Communication and information sharing are key factors in promoting children’s coping strategies (Waskett, 1995; Christ, 2000; Rauch et al., 2003; Christ and Christ, 2006). Practitioners working in palliative care have a pivotal role in offering support to children and families and fundamental to this is their role in communicating with children and their families. While this chapter is not suggesting that all children experiencing or who have experienced the death of a parent are at risk of significant harm, they are, within the Children Act 1989 definition, ‘children in need’, although very rarely acknowledged as such.

Communicating with and sharing information with children is widely acknowledged as an important factor in supporting them when a parent is terminally ill or has died (Waskett, 1995; Christ, 2000; Rauch et al., 2003; Christ and Christ, 2006). Furthermore, communication within families about a parent’s illness can act as a protective factor against children’s distress (Kroll et al., 1998). Research suggests that children’s emotional well-being is adversely affected when a when a parent is terminally ill or has died (Christ and Christ, 2006). This anxiety is heightened when children are not provided with adequate information about their parent’s illness (Beale et al., 2004).

This chapter discusses the key issues related to communicating and sharing information with families and children who have experienced parental death. Firstly, however, we briefly explore the literature that looks at the impact of early parental death. We then review the traditional theories of mourning and outline the dominant models of grief.

A recent review (Akerman and Statham, 2011) on childhood bereavement following parental death reports that children that had lost a parent experience a wide range of emotional and behavioural symptoms often classified as ‘non-specific disturbance’. The majority of children, however, do not experience serious problems (Haine et al. 2006). Even among children bereaved by parental suicide and cancer, most children reported low levels of psychological distress, suggesting a considerable degree of resilience (Ratnarajah and Schofield, 2007). This review also found that parents tend to report fewer symptoms and disorders in their children than children do themselves. The child often experiences an increase in anxiety with a focus on concerns about further loss, the safety of other family members, and fears around separation. Mild depression appears to be frequent, and can persist for at least a year (Akerman and Statham, 2011).

Akerman and Statham also found that psychiatric disorders are rare with only one in five bereaved children likely to manifest such disturbance at a level sufficient to justify referral to specialist services (Dowdney, 2000). This is most likely to take the form of depression or dysphoria (a combination of sadness and crying or irritability). Symptoms may include anxiety, depressive symptoms, fears, angry outbursts, and regression regarding developmental milestones. Across different types of potentially traumatic events, including bereavement, upward of 50% of people have been found to display resilience, suggesting that psychotherapeutic treatment should be reserved for those in genuine need (Bonanno and Mancini, 2008).

The evidence on children’s bereavement outcomes is difficult to summarize and some findings contradict others (Ribbens McCarthy and Jessop, 2005). In part, this is because children experience bereavement in a wide range of circumstances and opposite effects can cancel each other out in large-scale quantitative studies (Ribbens McCarthy and Jessop, 2005). An 8-year-old child whose lone parent dies suddenly and who enters foster care will have a different experience from a 15-year-old whose parent’s death is expected. Some children are more likely to experience bereavement; additionally, significant bereavement seems to bring greater risks to those who are already disadvantaged or have faced multiple losses (Ribbens McCarthy and Jessop, 2005).

Parsons (2011) found that there may be fewer longer-term effects for childhood bereavement and that children experiencing other forms of family disruption may suffer more extensive influences on their ability to negotiate successful transition to adult life. Many cumulative, interrelating risk and protective factors mediate or moderate children’s experiences (Worden, 1996; Ribbens McCarthy and Jessop, 2005). These can be at the level of the child (such as their prior experiences of loss, their preferred coping style), their family and social relationships (including their prior and ongoing relationship with the person who has died), their wider environment and culture, and the circumstances of the death (including whether the child perceives this as traumatic) (Worden, 1996; Ribbens McCarthy and Jessop, 2005).

The family is a key context for bereaved children and young people. Studies consistently point to the importance of higher levels of caregiver warmth, coping styles, and lower levels of caregiver mental health problems, discipline, and communication in protecting against negative outcomes from the death of the parents (Worden, 1996; Lin et al., 2004; Ribbens McCarthy and Jessop, 2005; Haine et al., 2006; Luecken et al., 2009; Akerman and Statham, 2011).

Very few studies have explored the impact of bereavement in adult life, particularly in the United Kingdom. A recent study (Ellis, 2009; Ellis et al., 2013) employed qualitative methodologies and narrative analysis to explore the experiences of 33 individuals (seven men and 26 women) who had experienced the death of a parent before the age of 18, in order to better understand its perceived impact on adulthood. Ellis and colleagues found that while individual experiences of bereavement were unique, five common themes were identified across the narratives that impacted on the bereavement experience: (1) disruption and continuity, (2) recognition of loss, (3) family dynamics roles and responsibility and context, (4) the public world of bereavement, and (5) identity and aspects of personal growth. The findings are very important as they provide insight into the damage and effects on the individual in adulthood as a consequence of inappropriate or neglectful management.

Much of the early evidence on the impact of early parental death is premised on traditional theories of mourning. Freud (1917/1957) developed the psychoanalytic theory of mourning based on his extensive research in this area. Until the 1960s, his theory had dominated clinical understanding, in the United States and the United Kingdom, of how children perceive and respond to the death of a parent (Saler and Skolnick, 1992). Freud explored the psychological process of mourning with individuals who had lost a parent through death and normalized the process of grief.

Freud (1917/1957) presented his theory of mourning in a paper entitled ‘Mourning and Melancholia’ in which he differentiated between healthy and unhealthy mourning. Freud’s theory primarily focused on the individual process of mourning. He proposed that individuals develop attachment or love to significant others who are involved in satisfying their needs: the more important the person, the greater the attachment. Love is defined as the cathexis of libidinal (psychic) energy to the love object (the person). When the loved object is lost through death, the survivor’s libidinal energy remains connected to the deceased through thoughts and memories. Freud argued that detaching or severing energy from the lost object is necessary. This process, which Freud referred to as hyper-cathexis, is achieved by reviewing all of the person’s memories of the deceased. While Freud acknowledged that the process of letting go of the lost object is painful, he saw detachment as critical in order to free the ego so that it can invest in new relationships. Thus, psychoanalytic theory proposed that if hyper-cathexis did not occur, melancholia (i.e. lowered self-esteem caused by the unresolved ambivalence in the relationship with the deceased) or unhealthy mourning would result. Freud’s theory referred to the adult experience, but succeeding generations of Freudian practitioners inferred that children and adolescents would be vulnerable to melancholia when a parent died because of their dependence on the parent and their developmental capacity for decathexis or ‘grief work’.

Freud’s understanding of loss and grief may be challenged because he worked from a psychiatric perspective and most of his theories were based on clinical experiences with depressed people and not on data from normal populations (Payne et al., 1999). Nevertheless, as Payne et al. point out, Freud’s concept of grief work and the need to confront grief in order to gain detachment has had a powerful influence on both subsequent theory and clinical practice both in the United States and the United Kingdom.

Pollock (1961) extended Freud’s theory of mourning. Pollock suggested that the main purpose of mourning is to facilitate the work of coming to terms with life without the deceased parent. According to Pollock, the process of mourning occurs in stages. The first stage is shock, which is followed by a period in which the work of mourning takes place. The final stage includes a separation reaction in which the presentation of the love object is restructured from present reality to that of memory.

Bowlby (1961) originated the theory of attachment and this would seem to underpin the basis for understanding bereavement (Dent, 2005). Bowlby provides an explanation for the common human tendency to develop strong affectionate bonds. He views attachment as a reciprocal relationship that occurs as a result of long-term interactions, starting in infancy between a child and its caregivers. He suggests that grief is an instinctive universal response to separation.

Both Bowlby (1961) and Parkes (1972) were stage theorists. The stage model of grief is a linear progression in which the bereaved person moves through specific stages or phases of grief in order to reach the goal or stage of resolution. The first stage of grief involves denial, shock, and feelings of numbness. The second stage includes acute symptoms of grief such as intense emotional pain, social withdrawal, physical symptoms, and identification with the deceased. The final stage of grief includes a return to normal functioning and reintegration (entailing a letting go of the loved one). Success or resolution was determined by the extent to which the bereaved was able to give up his or her original attachment with the lost loved one (Wilcox-Rittgers, 1997). Many of the stage theorists such as Parkes (1986) proposed fluidity in this linear model whereby the bereaved may move back and forth between the stages of grieving before moving on to resolution. Kuber-Ross’s (1969) stage model of the grief of terminally ill people is often applied to other loss situations such as bereavement.

In the stage model of grief the bereaved person is perceived as being relatively passive in terms of grieving (Holland, 2001). This theoretical perspective has become an established basis for professional training and self-help literature in the field of bereavement (Ribbens McCarthy, 2006). The stage-based model is criticized for having limited empirical evidence to support the existence of such stages in the grieving process (Shuchter and Ziscook, 1993). The early studies that informed these models have also been criticized, particularly for the dominance of young, white, middle-class widows (Payne et al., 1999) and for not accounting for diversity and individuality of reactions and for neglecting resourcefulness (Holland, 2001; Ribbens McCarthy, 2006).

An alternative to stage models is the task model of grief whereby bereavement is seen as a series of tasks to work though rather than just being a series of stages through which the individual has to pass Worden, (1982, 1991). Here the bereaved person plays an active rather than a passive role in the grieving process. Lindenmann (1944) developed the first task-based model of grief. He isolated three main tasks necessary for successful grief resolution. These tasks included (1) severing ties with the deceased, (2) adjusting to one’s new environment without the deceased loved one, (3) and creating new bonds with others. Again, the task of breaking the emotional bonds was considered the ultimate goal of grief work.

Worden (1982) developed a task model of mourning which has been extremely influential and is widely used by those who work with bereaved people. In relation to parentally bereaved children, grief is seen as a set of tasks in terms of normal responses that children need to negotiate (Worden, 1996). Worden discusses the tasks as being: (1) to accept the reality of death, (2) to deal with the emotional impact of the loss, (3) to adjust to the environment in which the deceased is absent, and (4) to emotionally relocate the deceased. In the context of the lives of young people, this approach has been further elaborated by reference to what are theorized as the developmental tasks of adolescence, the aim being to achieve a ‘healthy’ rather than a ‘pathological’ outcome; that is, a medical model of grief (Ribbens McCarthy, 2006).

Fox (1988) identified the following tasks for children coping with grief or loss to work through: (1) understand and make sense out of what has happened; (2) identify, validate, and express strong reactions to the loss constructively; (3) commemorate the life that was lived; and (4) learn to go on living and loving. Fox also identified other factors which influence the process of bereavement in children such as their understanding of death, the type of loss, and subsequent life circumstances.

Tasks models have also been criticized for their failure to recognize individual differences and other relevant factors which may trigger upsurges of grief throughout the bereaved person’s life (Rando, 1988).

An important development in grief theory has been provided by the work of Klass et al (1996), who challenged conventional thinking that the purpose of grieving was the reconstitution of an autonomous individual who could leave the deceased behind and form new attachments, in other words, ‘break the bonds’ with the deceased. Klass and his colleagues suggest that the purpose of grieving is instead to maintain a continuing bond with the deceased, compatible with other new and continuing relationships.

A more recent and significant advance in our understanding of grief work is the dual process model develop by Stroebe and Schut (1995, 1999). These authors suggest that avoiding grief may be both helpful and detrimental, depending on the circumstances. While previous models centred on loss, the dual process model recognizes that both expressing and controlling feelings are important and introduces a new concept: that of oscillation between coping behaviours.

Within this framework, grief is viewed as a dynamic process in which there is an alternation between focusing on the loss of the person who has died (loss orientation) and avoiding that focus (restoration orientation). The loss orientation encompasses grief work, while the restoration orientation involves dealing with secondary losses as a result of the death (Dent, 2005). For instance, a mother who loses her partner/spouse may have to deal with finances and house maintenance which previously her partner/spouse dealt with. Both the loss orientation and the restoration orientation are necessary for future adjustment, but the degree and emphasis on each approach will depend on the circumstances of the death, personality, gender, and cultural background of each person. The model also posits that by taking time off from the pain of grief, which can be overwhelming, a bereaved person may be more able to cope with their daily life and the secondary changes.

Such an approach is in line with recent discussion of the goal of ‘coping’ with bereavement rather than finding a resolution (Corr, 2000). Thompson (2002, p. 7) argues that this dual process model ‘alerts us to the complex web of psychological, cultural and socio-political factors which interact to make the loss experience far more complex than traditional approaches would have us believe’. However, a potential problem with extending the adult model to children is that it assumes that their experiences of bereavement are similar (Holland, 2001).

Much of the communication literature emphasizes the importance of open and honest communication (Jordan, 1990; Broderick, 1993)—this is seen as the most essential element in grief resolution in a family. Anxiety in children is increased when information is available but no opportunities are provided to allow them to discuss the information (Beale et al., 2004). Providing clear, honest information prevents misunderstandings, which may lead to frightening fantasies and fears (Saldinger et al., 2004; Turner et al., 2007). Euphemisms and abstractions are not advisable. Telling a young child that the deceased is ‘sleeping’ could cause the child to fear going to bed (McGuinness, 2011).

The importance and value of age-appropriate, open, honest communication with the child is discussed in Rauch et al. (2003). This information also needs to be timely and in a language appropriate to the child’s level of understanding which has been linked to their cognitive development, but it also reflects their experiences of death and dying (Slaughter, 2005). Such factors are acknowledged by more recent understanding of children’s concept of learning which has emerged in cognitive developmental research and theorizing in recent years (Slaughter, 2005). This intuitive theory approach of cognitive development emphasizes the role of casual-explanatory models in organizing children’s knowledge and driving learning about different domains of experience and recognizes the importance of conceptual change in children’s learning (Carey, 1985; Wellman and Geelman, 1992; Gopnick and Meltzoff, 1997; Inagakie and Hatano, 2002).

One of the seminal works in this new tradition analysed the development of young children’s conception of the biological world (Carey, 1985). From this perspective, an important factor influencing children’s understanding of death is the child’s personal experience with people and other living things that have died (Hunter and Smith, 2008). Intuitive theory challenges Piaget’s (1976) very influential theory of cognitive development, based on the chronological age of the child. Piaget addressed the ways in which children’s thought processes changed over time, regardless of the environment in which they grow. The Piagetian research documenting consistent stages of death established that children’s understanding of death is closely tied to cognitive developmental maturation. Within this explanatory framework it is believed that very young children do not have the capacity to understand abstraction such as finality and irreversibility, an understanding that only emerges when the child is capable of operational thinking (Piaget, 1956). Children may in fact see death as reversible. As children grow older, they develop the capacity to understand the abstractions associated with death (Worden, 1996). From this perspective, the development of an understanding of death appears to be most strongly influenced by developing cognitive competency (Slaughter, 2005). Piaget saw these development stages as universal, homogenous, and stable across cultures.

Piaget’s model has also been challenged by scholars such as Bluebird-Langer (1989). Bluebird- Langer describes how very young children who are terminally ill or life-threatened have a sophisticated understanding of death through their observation of how adults respond, knowledge of their own symptoms and treatment, and interactions with other dying children. Bluebird-Langer recognizes therefore that although the development of children’s understanding of death has been linked to their cognitive development, it also appears to reflect their experience of death and dying.

Research would suggest that younger children are less likely to receive the same amount of information as older children (Christ and Christ, 2006). Beale et al. (2004) delineate that a reason why parents do not share information with their children is because of their belief that the children are not aware of what is happening within the family. This is an important factor in communication and information sharing; younger children are frequently not included because of the belief that they are too young to understand. However, children from a very young age will be acutely aware that something is different within their family life. While they may be unable to comprehend completely what is happening, they will know that things are different and without some age-appropriate explanations it is likely that their assumptive world (Parkes, 1972) will be thrown into confusion and fear. The information given to children also needs to be repeated over time (Worden, 1996). Worden asserts that the repetitive questions that children ask about a death are a way for them to grapple with the reality of the death as well as a test to ensure that the story has not changed.

A recent retrospective study (Ellis et al., 2013) of adults bereaved as children found that those who had not been given timely and accurate information not only felt confused and fearful, they also often felt let down and betrayed by their surviving parent (or surrogate parent). The perception was that this had implications in adulthood, as it often led to trust issues which in turn affected their relationships. According to Herman (1992) one of the most important factors that make childhood loss traumatic is the feeling of having been betrayed by trusted adults.

Children need information not only at the time of the physical death but also when a parent that was known to them in terms of ‘mothering /fathering’ is lost to them due to illness, as this experience was very distressing for informants as they felt bewildered and confused as they didn’t understand what was happening (Ellis et al., 2013). Christ (2000) and Fearnley (2010) reported that regular medical updates about their parent’s condition were helpful. In common with Worden (1996), Ellis et al. found that children who are not given accurate information make up a back story to fill in the gaps and this can be more frightening than what actually happened. Ellis et al. also found that while as a mature adult, respondents were able to reflect on their experience and appreciate that it may have been done with the best of intentions (i.e. protectionism), and/or associated with dominant beliefs about parenting at the time, it was still very difficult for them to come to terms with.

The recent cognitive development literature generates specific guidelines for talking about death with children, which acknowledges the importance of children’s underlying folk biology to their capacity to conceptualize death. Slaughter states that even when adults provide explanations that appear to be clear and straightforward, such as ‘he died because his heart gave out’ or ‘the doctors did all they could but her body was too weak to keep living’ (2005, p. 184), such explanations may not be appropriate for young children if they presuppose a biological conceptualization of the human body. Slaughter goes on to say that even explanations that frame death in terms of a breakdown of the body, while concrete and unambiguous, are likely to be meaningless to a young child who does not recognize that death is characterized and ultimately caused by the cessation of bodily function.

However, the open expression of feelings highly valued in both psychodynamic and stage models of grief, can become destabilizing to a family’s negotiated rules for shared emotional stability. Social development theory highlights that in the absence of social resources, such as economic security or social support, bereaved families are forced to rely on interpersonally negotiated emotional controls as strategies for stability. Interpersonal control strategies in response to overwhelming grief, such as interactions suppressing differences in shared experience or restricting destabilizing change, interfere with the individual and family capacity for open communication, cohesion, and mutual support and may narrow the capacity for flexible coping with future development challenges (Shapiro, 1994, 1996). Shapiro (2001) states that the greater the stressors and discontinuities and the fewer social supports there are, the more likely families will be to rely on interpersonal control strategies that limit their ability to adapt. Such families inhibit their growing children whose maturing cognitive capacities generate new questions about the death and its meaning from exploring the experience of the death and their images of the deceased family member in ways that enhance ongoing development (Shapiro, 1994; Silverman, 2000).

Research undertaken by MacPherson (2005) found that not sharing information and communicating with the children was directly related to the parents’ ability to talk together about the illness. It was found that the dying parent influenced the decision whether the children were informed about the prognosis and the well parent followed their example. Fearnley (2010) refers to an interview with a specialist nurse who spoke at length about how in her opinion she had a significant role to facilitate those difficult conversations. She discussed how, by asking the parents questions about what their children knew of the situation and their understanding of it, new communication lines were opened and opportunities created for proactive supportive work to be undertaken. However, she also stressed that the initial discussions were ‘very gentle to test out what the children may have been told’ and to see what hesitations or beliefs the family may hold that prevented them from talking with their children. It would appear that these initial conversations are imperative so that the channels of communication can be opened.

In common with Hooghe et al. (2011), Ellis et al. (2013) suggest that if the negative consequences of bereavement are to be minimized, it is crucial that rather than unilaterally advocating the promotion of open communication, those working with bereaved families first discuss the complexities of communication with the family members, specifically those concerning talking and keeping silent, and explore the different meanings associated with sharing grief experiences with each other. Such an intervention may help the family as a unit, through interpersonal communication, to integrate experience and adapt to changes with few attempts to control thoughts and feelings in ways that impede shared development (Shapiro, 2008).

However, according to Fearnley (2010), the quality of information exchange is often dependent on the practitioner’s professional background. Fearnley reported that a number of families in her study talked about how the focus of support from the nursing teams was medically orientated. Furthermore, it was noted that the nursing staff generally visited the family home during the day, when the children were at school, and therefore their issues were not discussed nor were they party to any information. Fearnley also found that when specialist social care staff were involved there was typically an increase in the amount of information provided to the children. This was provided directly through discussions and therapeutic sessions.

The emerging findings from this study also indicate that some qualified practitioners have difficulties using the words death, dying, and dead. This avoidance of the words and to supplement the conversations with euphemisms (which may lead to misunderstanding of information) were indicative of the individual’s personal difficulties and how in general society has a death-denying attitude (Fearnley, 2010). Fearnley reflected about the choice of language and whether this was symptomatic of the notion that the subject is taboo within some cultures. Drawing on the evidence from her research, Fearnley suggests that there is a stigma attached to talking about death and dying and that practitioners find it difficult and embarrassing to discuss such topics. Fearnley asserts that this sequestration leads to a pattern of communicating that avoids any involvement of such unmentionable vocabulary. The metaphor of the elephant in the room is used to delineate how practitioners avoid such discussions and thereby miss opportunities to support children experiencing potentially the most traumatic event they have ever faced. Fearnley suggests that this is related to a lack of training for practitioners both as students and through continual professional development.

In this chapter we have explored the literature that looks at the impact of parental death. We have also outlined some of the dominant models of grief. Most suggest that bereaved people need to engage with their loss and work through it, so that life can be reordered and meaningful again. Worden’s tasks of bereavement give a framework to guide the bereaved in their grief work, while the dual process model demonstrates the need to deal with secondary stresses as well as the primary loss, with time away from both. It is also important to recognize that the bereaved do not need to forget and leave the deceased behind, but can integrate them into their future lives by means of a continuing bond. An understanding of the different models of grief together with an understanding of the relationship between age, experience, and manifestations of grief in children are crucial for practitioners to provide effective support. An understanding the family dynamic is also of great importance for those working to enhance communication in identifying possible tensions between members and assessing how members may influence or be influenced by others, as well as understanding what the death means to each member. Each bereaved person is unique and will deal with a significant death in their own way; therefore there is no one right or wrong way to grieve. In many cases, the family is very often the prime provider of socialization, social control, and support. Certain factors either inhibit or enhance a family’s grief. Families in which there are fragile relationships, secrets, and divergent beliefs may have more difficulty in adjusting; whereas families who have frequent contact, rituals, and a willingness for each member to share their feelings may find it easier. Those talking to families and children about the death of a parent need to acknowledge the complexities involved. They also need to acknowledge that a family’s capacity to communicate and share information with their children is historically driven and mediated by the social, cultural, and economic context in which it resides. If families and children are to be supported at potentially the most traumatic time in their life, practitioners also need to ensure that they have the necessary skills, competencies, and confidence to engage with families in ways that enhance communication and information sharing.