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Communicating with children when a parent is dying 

Communicating with children when a parent is dying
Chapter:
Communicating with children when a parent is dying
Author(s):

Cynthia W. Moore

and Paula K. Rauch

DOI:
10.1093/med/9780198736134.003.0053
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date: 22 July 2018

Introduction to communicating with children when a parent is dying

Concerns about dependent children are prominent, and distressing, for the many parents diagnosed with a life-threatening illness. Concerns commonly identified include the impact of the parent’s own altered physical and emotional functioning on the child’s day-to-day routine and emotional well-being, as well as how to simultaneously protect children from distress, and keep them informed about the illness. And, even in the early stages of illness, many parents consider how children would cope in the event of their death and are aware that children worry about that possibility as well (Muriel et al. 2012; Asbury et al. 2014). Like adults, children experience a range of concerns about the parent’s illness. Latency age children worry about the side effects of treatment, the parent’s possible death, changes in the parent’s appearance, and the potential for separations from the child. Adolescents worry, as well, about making mistakes in the parent’s care, the well parent’s functioning, their own risk for cancer, and how to make meaning of the illness (Grabiak et al. 2007; Thastum et al. 2009; Bradbury et al. 2012).

Thus, helping parents feel prepared to talk with children about their illness and possible death, at any stage of illness, has the potential to alleviate distress in both parents and children. This chapter provides suggestions about how clinicians can support parents’ open communication with their children, drawing on the authors’ clinical experience from over a decade of providing parent guidance to patients treated in an academic cancer centre in Boston.

Review of the literature

Patients who are parenting minor children experience some unique challenges, resulting in increased strain for them (Bultmann et al. 2014). Compared to survivors without children, young mothers report more fear of cancer recurrence and a sense that the illness intrudes more in their lives (Ares et al. 2014). Parents reporting high levels of distress about the impact of the illness on children also have more symptoms of depression and anxiety, and poorer quality of life (Muriel et al. 2012).

Children’s adjustment is affected by parental cancer. Over a 21-year period, children of cancer patients in Finland used more specialized psychiatric care than peers (Niemela et al. 2012). Children with an ill parent are at risk for symptoms of anxiety and depression, irritability, intrusive thoughts, somatic complaints, difficulty concentrating in school, and poorer school performance (Nelson and While 2002; Visser et al. 2005; Watson et al. 2006; Rainville et al. 2012). While the stage of a parent’s illness, type of cancer, and other illness-related variables do not predict children’s distress, illness-related disability predicts worse adjustment in children, partly through its impact on role redistribution in the family (Pakenham and Cox 2012; Bultmann et al. 2014).

A parent’s depression or anxiety heightens a child’s risk for adjustment problems; depression combined with poorly defined family roles further heightens risk for internalizing problems (Watson et al. 2006; Bultmann et al. 2014; Gotze et al. 2014). Parental depression seems to impact children’s symptoms partially through its negative effect on family cohesion, or sense of ‘we-ness’ (Watson et al. 2006; Lindqvist et al. 2007; Pakenham and Cox 2012). A family’s ability to solve problems flexibly predicted less adolescent distress, and warm and supportive parenting was associated with fewer internalizing symptoms in 8–16-year-old children in families dealing with parental cancer, but not in families without illness (Lindqvist et al. 2007; Vannatta et al. 2010).

Communication and children’s adjustment

Family communication style relates to children’s adjustment to parental cancer. Adolescents who feel there is open communication between family members have less anxiety and fewer externalizing problems (Watson et al. 2006; Lindqvist et al. 2007). Adolescents with negative feelings about family communication, or who tend not to share feelings with parents, reported more intrusive thoughts about the parent’s illness, greater efforts to avoid thinking about it, and more overall distress. Further, communication was poorer when the parent had recurrent disease or was receiving more intensive treatment (Huizinga et al. 2005).

Further studies on communication about parental cancer are needed to clarify whether the family’s general communication style, which is what is typically assessed, translates consistently to communication about cancer in particular. In addition, too little and too much information about cancer might negatively affect children; if this were so, the linear models commonly used to test the relationship between open communication and child functioning may obscure some important information.

Content of family communication about illness

Interviews with parents further clarify the communication challenges they face. Choosing whether, when, and how to share news of a cancer diagnosis with children is one of a parent’s first, and most difficult, decisions. Parents base these decisions on their wish to protect children and maintain a sense of normalcy (Asbury et al. 2014), and there is variability in the extent to which children are told about the illness. In a group of children whose mothers had breast cancer, 19% were unaware of the diagnosis even after the mother’s surgery or radiation therapy (Barnes et al. 2002). Older children received more information sooner. Mothers who talked more openly believed the child had a right to know, wanted to keep the child’s trust, and hoped that talking would alleviate the child’s anxiety. Those who disclosed less wanted to avoid facing difficult questions, including questions about death, wished to protect the child, to preserve special family occasions, and believed that the child would not understand the illness (Barnes et al. 2000).

While parents want very much to protect children from worrisome news, children themselves seem to want information. A qualitative study of 8-15 year olds indicated their desire for a clear understanding of their parent’s illness, even though they realized such conversations could be difficult (Thastum et al. 2008). Interviews with adolescents with a mother with breast cancer indicated that a major concern was whether she would survive (Kristjanson et al. 2004). Bereaved adolescents overwhelmingly believe they should have been told that a parent was going to die imminently, within hours or days. Strikingly, 43% of them had not realized that the death was imminent up to a few hours before the loss (Bylund-Grenklo et al. 2014).

These studies emphasize the value that parents and children place on open communication about illness. Yet the fact that individual adolescents’ need for information varied, depending on family and personal characteristics, poses a challenge in translating these results to family interventions. It may be that an individualized parent or family guidance approach is better suited to meeting the unique needs of each child in a family, than a group ‘one size fits all’ model.

A recent review found that helping children to understand the parent’s somatic illness and medical treatments was a consistent priority for interventions (Diareme et al. 2007). However, this need is not fully yet fully met, as healthy parents who wanted to talk with a health professional about how and when to tell children when their parent would die, were rarely offered such a conversation (Aamotsmo and Bugge 2014). The remainder of this chapter is focused on helping health professionals to feel comfortable providing just that kind of support.

Children’s reactions to parental illness and death: A developmental model

Conversations with children about parental illness must be developmentally appropriate, or they risk being confusing or mis-attuned to children’s real worries. Highlights of children’s understanding of, and reactions to, illness based on stage of development are summarized in Table 53.1.

Table 53.1 Children’s conceptualization of parental illness and death

Child’s understanding and reactions

Guidance for parents

Infants and toddlers (0–2 years)

  • Aware of parent’s absence, but not the reasons

  • Sensitive to disruptions in their routine and caregivers’ distress

  • Provide consistent caregivers, routines, and settings

Preschoolers (3–5 years)

  • Aware of the absence of a loved person

  • Explanations for illness and death are often inaccurately self-centred or self-blaming (‘I got mad at Daddy, and made Daddy sick’)

  • Egocentric questions are common (‘When can you play with me again?’)

  • Limited concept of time creates need to tie events in the future to concrete markers (a birthday, Halloween)

  • Concrete thinkers, so euphemisms like ‘Mummy is in Heaven now’, are misunderstood

  • Death understood as prolonged separation; may believe the deceased is alive elsewhere

  • Do not appreciate that death is irreversible, and may offer ‘solutions’ to death, such as trying a new medicine or replacing old batteries

  • Explore child’s understanding of the illness and/or death; dispel guilt by correcting misconceptions and reassuring the child that nothing they did caused the illness or death

  • If a parent is withdrawn, explain that the parent is sad or worried, and why, and that the child did not cause the adult’s distress

  • Provide concrete descriptions of death (his body does not work anymore: he can’t see, hear, or feel anything; his heart stopped pumping and he stopped breathing)

  • Be patient in repeating that the deceased will not come back

  • Maintain consistent caregivers, preschool attendance, play dates, meal times, and bedtime rituals during illness and after a death

School-age children (6–12 years)

  • Simple cause and effect logic promotes curiosity about causes of illness and death, but may have significant gaps in understanding, e.g. may believe that cancer is contagious, or cancer is always caused by smoking

  • May believe that stress causes or maintains illness, and be extremely concerned about ‘stressing out’ the parent with less-than-perfect behaviour, poor school performance, or even talking about worries

  • Worry about the health of other important adults

  • Understand that death is final and irreversible, but do not fully appreciate that it is universal

  • Better understand the physical aspects of death, but may struggle to comprehend the spiritual aspects

  • May experience guilt about things they did or did not do with or for the deceased

  • Provide a simple explanation of the diagnosis and treatment of an illness, and clear, accurate information about causes of death (‘Mom’s cancer had spread to so many places in her body, and there just weren’t any medicines that helped anymore’)

  • Dispel misconceptions regarding causes of illness or death, as well as contagion

  • Maintain predictable routines and expectations

  • Maintain school as an island of normality

  • Somatic complaints are common; ask for updates from school about frequency of visits to the nurse

  • Help put guilt and other concerns in perspective by thinking together about the entire relationship rather than only the recent past

Adolescents (13–18 years)

  • New capacity for abstract reasoning promotes adult-like worries (e.g. about family finances, the well-being of siblings) as well as questions about justice, and the meaning of life and suffering

  • Egocentrism and emotional immaturity may still cause them to focus on the personal effects of illness or loss in ways that can feel selfish to adults

  • Understand that death is final, irreversible, and universal

  • May feel anxious about their own mortality, e.g. susceptibility to a heritable illness

  • Sensitive about how a loss sets them apart from peers

  • Conflictual relationships with either parent may produce resentment, guilt, or regrets, that complicate adaptation to the illness and grief

  • Provide information about the illness and treatment, and clear, accurate information about causes of death

  • Remember that adolescents may seek information from other sources, such as the internet, and encourage them to check the accuracy of this information with parents

  • Respect adolescent’s wish for privacy and control over dissemination of information about an illness or loss, as much as seems reasonable

  • Encourage conversations and relationships with appropriate non-parental adults

  • Do not expect adolescents to assume adult responsibilities

  • Watch for evidence of risk taking behaviour or substance abuse in response to the illness or death

Across age groups, it is important to maintain regular routines and expectations to promote children’s sense of security. Additionally, children will benefit from having family time that feels ‘normal’ and which is not always focused on the parent’s illness. Parents may need help in recognizing the many ways that reminders of illness impinge on their child’s life, and in learning how to retain a sense of normality.

Children at any age may have temporary fluctuations in their behaviour or mood following a change in a parent’s medical status. However, these are usually not expected to last more than a few weeks or to cause significant ongoing impairment. Should a child exhibit difficulty in more than one setting (home, school/daycare, with peers), or for more than several weeks, a conversation with the paediatrician, and perhaps an evaluation with a mental health professional, would be warranted.

Guidelines for talking about a parent’s terminal illness and death

Although the approach to talking to children about illness and death must take into consideration the child’s developmental level, certain general goals guide most of these conversations. Conversations should balance warmth and openness, with care not to overwhelm a child with more than s/he needs to know. In timing the conversation, the goal is to prevent the child both from being caught unawares by significant events, and from being made too anxious for too long about events far in the future. Often, a child’s questions in response to a ‘news bulletin’ provide a guide for further discussion.

Family conversations about a parent’s chronic illness have different goals at different times, but address a number of common themes. Most families will find they need to share information about the diagnosis, treatment progress, and changes in prognosis; to discuss how treatment will affect a child’s day-to-day life; to problem-solve around some area of family life that isn’t working well; and simply to provide reassurance and an opportunity for children to express their feelings. Some families will also need to discuss a parent’s impending death, or address children’s worries about a parent’s death, even when the parent is medically stable.

When these conversations are handled sensitively, they teach children a number of important lessons. Open communication signals to children that they are a valued part of the family, worthy of being included in age-appropriate decision-making. This feeling of ‘family as team’, on which each member has an important role to play, may reduce a child’s sense of isolation. Parents are encouraged to have conversations that actively inquire about, and validate, children’s feelings and reactions to illness, whether positive or negative. Children need to feel confident that their worries will not be taken lightly, and that adults will do their best to help them manage their worries. Finally, allowing children to hold on to hope, even when a death is imminent, may be more helpful than working too hard to help the child see ‘the truth’.

Talking about initial diagnosis

Parents frequently express concern about having the first conversation with children in which they confirm a cancer diagnosis. They worry that their children will feel overwhelmed with fear or sadness, and that they will be unable to cope with their children’s feelings. This fear can inhibit communication, so it is important to help parents set the stage for these conversations. Children tend to feel most comfortable hearing distressing news when they are in a comfortable place, usually home, where they can react without fear of embarrassment. There is no single ‘just right’ time to talk, but parents may plan the conversation for a time when there will be time for talking as a group, as well as individually with each child. Ideally, the child will be free after the conversation to make some choice about what to do next—whether calling a friend, engaging in a solo activity, or engaging with the parent.

Often parents struggle with whether to simply tell children that they are ‘sick’ or whether to specify the name of the illness. They fear burdening their children, especially when the child has experienced a cancer-related death. Parents are reassured to learn that, frequently, their own worries are different than their children’s. The word ‘cancer’ may not carry the same frightening connotation for children as for adults.

Children are likely to overhear conversations between parents and doctors, friends, and other family. Without direct communication, it is difficult to know what the child has heard but isn’t talking about. An atmosphere of openness allows parents to feel more confident that their children will ask questions, rather than keep concerns private.

Parents may find it easiest to begin by recapping any unusual events from the past weeks, explaining the events, and checking with children about their understanding and reactions:

You might remember that I’ve had a few doctors’ appointments in the past couple of weeks, and that sometimes you’ve gone to a friend’s house after school since I haven’t been home. The doctors have been trying to understand why I have [whatever symptom may have initiated the process]. They just told me that I have something called [breast, colon, etc.] cancer. I am feeling sad, and wish I didn’t have [—], but there are treatments that my doctors expect will [cure, contain] the cancer. I’m going to do everything I can to get better. You will probably have questions and feelings about this and I want us to talk about them together as they come up.

For a younger child, a parent might simply say:

I am sick with something called cancer. I’m going to be visiting the doctor a lot and taking medicine to get better. Some days, Mrs Smith will bring you to preschool instead of me.

Talking about a change in treatment

To an adolescent or a school age child, the parent can say something such as:

My doctors told me recently that the medicine I’ve been taking/treatment I’ve been getting isn’t working to shrink the cancer. It turns out the cancer has spread, or metastasized. I’m upset about that because I had hoped this treatment would really help. But, my doctor has suggested a new kind of medicine that I’m hopeful will work better.

Parents can go on to let the child know when and where the new treatments will occur, and how this will affect the child’s routine.

Some children will ask, ‘But what if this medicine doesn’t work, either?’ Parents may want to be hopeful, while acknowledging the uncertainty:

Well, that’s a possibility, but right now I’m optimistic that this new medicine [or treatment] will help a lot. If it turns out that this doesn’t help, I’ll work with my doctors to figure out another kind of treatment that might work better. And, I’ll let you know how this goes.

They may also want to underscore their confidence in their medical team, so that the child is less likely to feel worried that better care would be found elsewhere.

Talking about the end of active treatment

Learning that active treatment options have been exhausted is extremely painful, and parents may struggle with whether to share this information with their children. With younger or very anxious children, as long as the parent is not facing death within a few months, it may be better to wait. But for adolescents and children who ask many questions, a conversation may be helpful. Parents might say:

You know I have tried quite a few different kinds of treatments for cancer—radiation, several chemotherapy medicines, surgery, more chemotherapy—and none of them worked as well as we hoped. The cancer has continued to spread [or grow]. My doctors just told me that we have run out of treatments that might even slow down the cancer. I will still go see them, but the medicine they will be giving me is just to make sure I am comfortable and not in too much pain.

Or with a younger child:

You probably remember that I have tried several different kinds of medicine to get better from cancer. None of them has been able to keep the cancer from getting worse. I just found out from my doctors that there aren’t any more medicines to even try that could make my cancer better. So now the medicine I take will just be to make sure I don’t have too many aches and pains.

Soon after this point, adults may also need to discuss the possibility of a referral to a hospice, home care with hospice, or inpatient treatment. It may be helpful to talk with older children about how these different options would look and to elicit their feelings and concerns about the options. For example, some children have great difficulty seeing a parent in a hospital bed at home. A temperamentally inflexible child may be unsettled by the frequent comings and goings of nurses. On the other hand, some anxious children prefer that everyone stay under one roof together and are reassured by frequent check-ins with the ill parent.

Talking about imminent death

Adults often wonder about how to facilitate children’s saying goodbye to a dying parent, and at what age such a conversation becomes appropriate. In part, it depends upon what is meant by ‘saying goodbye’ and the dying parent’s ability to be responsive to the child. For a toddler or preschool child, saying goodbye might mean giving the parent a kiss and saying ‘night-night’ as he has every evening, without awareness that this may be the last time he receives a kiss in return. For a 6–12-year-old child, it might mean telling the parent the best and worst parts of her day, and hearing in return the parent’s love and pride in her. For an adolescent, saying goodbye might entail simply saying, ‘I love you’ to a parent with whom the adolescent had argued frequently.

If children are made aware that a parent is not likely to survive much longer, these kinds of final conversations with the parent become more likely. Parents, in return, can say how much they love the child and also that they forgive the child for any conflict or difficulties in the relationship and recognize that the child loves them in return. Ideally, these conversations will happen gradually, rather than in one afternoon. While there is no definitive time at which to tell a child that a parent will die, parents will want to do so early enough so that talking is not prevented by sudden declines in cognitive function or mental status. However, telling children too far in advance can serve to heighten anxiety, establish an expectation for good behaviour over an impossibly long period of time, and be confusing for a child who sees the parent continuing to function reasonably well. Sharing feelings aloud can be encouraged by simply saying that it is important to do so in case things do not go as everyone hopes. It is often unclear how much longer a parent will have the capacity for these conversations, so adults can suggest to children that time with the ill parent is precious and it is important for them to say what needs to be said soon.

Not all children will want to, or should, see a parent who is close to death. If caring adults take the time to try to understand and alleviate any concerns the child may have, the child may be amenable to visiting, but should never be forced. Children express concerns about being in the hospital and feeling frightened of the strange people and equipment there; fear that they will have trouble remembering a parent as healthy if they see the parent looking extremely ill; and fear that they will be embarrassed if they cry in front of other people outside the immediate family. Often, providing very clear descriptions of what the child may see, hear, and experience, reminding children that they may leave the parent’s room at any time with a designated adult, limiting other visitors while children are there, and normalizing a variety of emotional responses, will allow the child to feel well enough prepared.

Talking about death with children

Death is commonly referred to euphemistically. We speak of someone ‘passing on’ or ‘passing away’, ‘being called to be with God’, ‘going to Heaven’ or ‘going to live in the sky’, or ‘being taken by the angels’. Even when adults disagree about the spiritual meaning of death, we share a common understanding that death is the end of biological life. Children lack this shared understanding and thus rely on clear explanations from adults about what has occurred. Once again, development plays an important role in the child’s ability to comprehend and process the news of a parent’s death (see Table 53.1). Hearing death described solely in spiritual terms may be confusing for children, as it was for a five-year-old who resolved to become an astronaut so he could visit his father who now ‘lives in the sky’.

In addition to a clear description of the death, children may need reassurance that adults are available to care for them and to love them, that much about life will remain constant, and that they will not always feel so sad. Their questions may range from the concrete (‘What will happen to Mum’s clothes and credit cards?’) to the philosophical (‘Do you think Dad somehow knew it when I got that goal in hockey?’).

Talking about the funeral

Adults can prepare children for a funeral by describing what they are likely to see and hear during the rituals, and the kinds of emotions that may be expressed by mourners. For example, the child may see a large wooden box, called a casket or coffin, in the middle of the church. The casket (coffin) holds the dead body. People may be crying during the service because they are sad and miss the person who died.

Family members may disagree about whether younger children should attend a parent’s funeral. It may be helpful to provide them with the option of leaving the service early, by identifying in advance an adult to stay with each child. Families may also wish to take the opportunity presented by having many friends and relatives together to request that stories about the deceased be put in writing. These create a legacy of memories of the parent that children may appreciate even more as they get older.

Challenges to professionals

Talking with patients about their children can be emotionally draining. However, enormous gains in rapport and trust can accrue from asking about, and addressing, parenting concerns, precisely because these are such affect-laden issues. Clinicians can start by making the effort to ask parents about their children, to learn a bit about child development, and to identify or create some resources for these families.

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