Addressing parenting concerns of bone marrow transplant patients: opening (and closing) Pandora's box

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Abstract

Although a significant number of adults undergoing stem cell transplant (SCT) or bone marrow transplantation (BMT) care for dependent children, and these treatments pose significant challenges for families, research has virtually ignored the impact of parenting on patients’ quality of life during BMT/SCT and children's responses to having a parent undergo these treatments. Physicians rarely inquire about parenting concerns related to the extended hospitalizations necessitated by these treatments, yet clinical experience suggests that addressing patient concerns about children's reactions to cancer and BMT/SCT can improve the experience of the patient and the patient's family, and help the medical team respond effectively to sources of patients’ distress. Parents frequently want to know what reactions to expect from children, thus general developmental information is reviewed, and recommendations given for when professional help for children is warranted. A key way for parents to support their children is with open, honest communication; however, parents often find it extremely difficult to talk about cancer and BMT/SCT with their children. The medical team can assist patients’ efforts to communicate with and support their children by asking about a patient's children, providing some targeted information, and discussing the potential impact of treatments on parenting capacity. Inquiring about and addressing parenting concerns may initially seem difficult, but can ultimately facilitate stronger doctor–patient alliances, and more compassionate care.

Main

The stressfulness of bone marrow transplantation (BMT) and its adverse impact on patients’ quality of life is intuitively obvious and reasonably well documented. The combination of invasive medical procedures, medical complications such as infections, graft-versus-host disease (GVHD), toxicity side effects, long hospital stays and protective isolation constitutes a unique, major stressor, even for patients who adjusted well to earlier difficult cancer treatments (Table 1). Patients undergoing BMT or hematopoietic stem cell transplant (SCT), and particularly those who develop chronic GVHD, report a wide range of problems, including worse physical functioning even a year post transplant, decreased health status, sexual problems, loss of employment, and physical and mental fatigue.1, 2, 3, 4, 5, 6, 7, 8, 9, 10 Significant demands are also placed on patients’ caregivers in terms of time and financial commitments.11 However, studies exploring the particular challenges experienced by BMT/SCT patients who have dependent children at home, and by the children themselves, are absent from the literature. This is striking given that almost a quarter of all adults with cancer have children under 18,12 and the relatively young age of many BMT/SCT patients suggests that a great many more than that will be parenting dependent children.9 Although recently there has been increased interest in understanding the impact of a parent's cancer on children's functioning, the ways the prolonged separation from a parent, the parent's risk of mortality, and the lengthy recovery period endemic to BMTs and SCTs impact a child's development and functioning are still poorly understood.

Table 1 Aspects of BMT/SCT that adversely impact children of patients

Clinical experience through the Massachusetts General Hospital Parenting at a Challenging Time (PACT) program (Table 2) suggests that patients who are actively parenting have unique concerns about the prospect of treatment with a BMT or SCT, and at times a great deal of distress related to these worries. Our experience also suggests that although oncologists may be aware that a patient has children, they rarely inquire about parents’ concerns about how their children will cope with the challenges of the transplant process. Oncologists often lack developmental expertise and may believe they have little to offer parents, or that parenting discussions are the responsibility of other health-care providers. They may mistakenly assume that patients will initiate discussions about parenting concerns, if such concerns affect treatment decisions or quality of life. There are always the pressing constraints of too much to do in too little time, yet it is not uncommon for oncologists to inquire about hobbies, interests and favorite sports teams, so time pressures alone do not seem to preclude these discussions. Some clinicians voice the concern that asking about children will be like opening Pandora's box, eliciting overwhelming affect for the patient or the physician,15, 16, 17 and likely this perception is a major barrier that needs to be addressed. We have found that talking with patients about their children need not be emotionally overwhelming, but rather can be targeted and useful. In our experience, the oncologist's leadership in creating a health-care team that actively addresses patients’ concerns about their children's reactions to cancer and to treatment with BMT/SCT can improve the experience of the patient, the patient's children and partner, and the medical team. The role of parent is central to many patients’ identities, and thus helping patients continue to parent at their best capacity, even in protective isolation, is a critical aspect of compassionate treatment.

Table 2 The Massachusetts General Hospital Cancer Center PACT program

Why inquire about parenting concerns?

By addressing parenting concerns directly, oncologists may uncover issues that drive treatment decision making: both men and women with children living at home expressed willingness to trade quality of life to gain a survival advantage more readily than patients without children at home,18 and women with breast cancer living with and supporting dependents considered smaller benefits of adjuvant chemotherapy worthwhile.19 Many aspects of SCT, such as extended hospitalizations, isolation, treatment toxicities, fatigue and changes in mood and appearance affect parenting, yet patients may not be well prepared for this and therefore fail to adequately prepare their children.20, 21 Describing the functional impact of a transplant on a patient's ability to carry out parenting responsibilities, both short and longer term, and anticipating children's reactions to changes, can provide a meaningful context for doctor–patient conversations about treatment side effects.

Asking about parents’ concerns about children may also provide insight into an important source of patient distress. Having children at home contributes to greater psychological distress in response to cancer diagnosis and treatment, for patients and their partners, resulting from worries about children's coping with parental illness, increased role strain within the family or other factors.22 Although parenting concerns are common, patients frequently do not raise them with the medical team. Some evidence suggests that many patients look to their physicians to initiate the important and difficult conversations. About 80% of a group of patients receiving palliative chemotherapy, for example, indicated that they would like to discuss their relationship with their partner and family with their oncologist, yet almost 29% reported they would do so only if their doctor raised the issue first.16 A physician's leadership in raising difficult issues has the potential to simultaneously uncover and ameliorate distress: one study found that patients with cancer who had been satisfied with doctor–patient communication reported less emotional distress than those who were less satisfied.23 Thus, the oncology team's willingness to broach the topic of parenting concerns may help the team to understand better a patient's treatment decision-making processes, and respond to sources of patient distress.

Which children are most at-risk for poor adjustment?

Parents seeking consultation from the PACT program frequently want to know what reactions to expect from their children, what is ‘normal behavior’ and when they should be concerned. Studies of children's functioning in the context of parental cancer, with sample sizes large enough to confer adequate power for statistical comparisons, and good control groups, are scarce, and we are unaware of any studies that specifically address the reactions of children with parents undergoing BMT/SCT. However, research on the factors believed to influence children's resilience in coping with parental cancer more generally provides a starting point for understanding the reactions of this smaller group of children. Some factors related to resilience include characteristics of the child, such as the child's age,24, 25, 26, 27 gender25, 28, 29, 30 and coping strategies;31, 32 characteristics of the parents, such as the gender of the ill parent,25, 33, 34 the parents’ emotional and physical functioning,26, 30 and parents’ coping strategies;28 characteristics of the illness, such as whether the cancer has recurred,25 the treatment demands,26, 30 the perceived stressfulness of the illness27, 33 and the family's previous exposure to cancer;35 and finally, characteristics of the family, including marital status,26, 35 marital adjustment,36 family size26 and family functioning, cohesiveness and flexibility.30, 37, 38, 39, 40 The bottom line clinically is that although a parent's cancer is a stressor, the significance of the impact varies child-to-child and family-to-family. Thus, clinicians need general information about supporting the coping of children of different ages, and recommendations for when parents should seek professional help for their children.

Helping parents anticipate children's reactions

Rauch and Muriel17 have previously described in detail how children at each developmental stage understand a parent's illness. Here, we review how children at different ages typically respond to a parent's cancer and cancer treatment, with the hope that this information will help members of the multi-disciplinary BMT/SCT team feel better prepared to start conversations with parents who want to know what to expect from their children and when to seek additional help.

Toddlers and preschoolers (2–5 years)

Even with age-appropriate explanations, preschoolers have a limited understanding of parental illness and the goals of BMT/SCT, so changes in their functioning are mainly in response to the separation from a parent, signs of parental stress and changes in the caregivers or the daily routine, such as mealtime or bedtime rituals.41 However, their natural egocentricity, along with a lack of cause and effect logic, can lead them to assume mistaken responsibility for the parent's long absence that needs to be addressed. A preschooler might believe that his mother's extended absence was caused by his earlier angry wish that she ‘go away,’ and would benefit from hearing that nothing that he thought or did made his mother leave. Preschoolers may develop intermittent somatic symptoms,42 and behavioral regression is common, but usually short-lived. Parents may find it helpful to hear, for instance, that toileting gains may temporarily slide, or that a child may have more difficulty than usual when asked to ‘use your words, not your hands’ to express anger or frustration, but that maintaining as much structure and consistency as possible in the child's day-to-day routine will help keep most children at their usual level of functioning.

Latency and pre-adolescent children (6–12 years)

Elementary school-age children are capable of understanding basic information about cancer and BMT. However, they may apply newly developing cause and effect logic inaccurately, as when an 8-year-old girl worried that she would ‘catch’ her mother's cancer. Fear of contagion can be heightened in the context of the emphasis after BMT/SCT on avoiding infection, and children are not always clear about who is at risk of infecting whom. Children may also have difficulty separating the course of the illness from treatment side effects and are likely to understand the seriousness of the parent's illness based largely on how the parent acts day-to-day.43, 44 Latency age children are keen observers of fluctuations in parents’ mood, attention and levels of affection, even visiting in the hospital or over the phone, but may misunderstand what motivates these changes and as a result feel responsible and guilty. For example, a 10-year-old boy, having just learned from his school's science curriculum that stress can influence illness, may recall telling his dad about a poor grade on a math test and implicate himself in the genesis of his father's GVHD symptoms. Children this age commonly worry about a parent's dying, even when they are not told explicitly about the risky nature of BMT, and also worry about the vulnerability of the well parent and other family members. Like younger children, they do best when their normal activities and relationships are maintained, but also benefit from having parents actively inquiring about their understanding of the illness, their worries and their desire for more or less information.32, 45, 46 Children at any age can benefit from being invited to share their worries with a loving parent.

A subset of 6- to 12-year olds facing parental cancer seems to experience levels of anxiety and sadness (‘internalizing’ disorders) that far exceed these typical, though distressing, worries. A few studies have also found an increase in problem behaviors such as aggressiveness or hyperactivity (‘externalizing’ disorders) (Table 3). Children with significant worries or behavior problems, whether or not they have a parent with cancer, require professional support. As a family settles into a new routine around the illness and treatment, parents can be encouraged to monitor their children's reactions and to seek psychological support if disruptions in the child's functioning do not resolve within a few weeks.

Table 3 Psychiatric symptoms in children facing parental cancer

Adolescents (13–18 years)

Interviews with adolescents about the experience of having a parent with cancer suggest that new levels of cognitive and emotional maturity bring additional challenges and concerns. Adolescents’ growing capacity for abstract and hypothetical thought allows them to more fully comprehend many aspects of the parent's illness and treatment, including many of the treatment risks, possible ramifications for the family's future, such as financial strain, and the emotional burden on the well parent. They report feeling fearful of the ill parent's death, fearful of developing a genetically linked illness and worried about being left alone to care for a parent at home and making a mistake.47, 48, 49, 50, 51 Adolescents may also feel torn between establishing increased independence by forming close relationships outside the family, and being needed more at home to help with a parent's post transplant recovery, and may feel quite guilty about the feelings engendered by this conflict.35 Parents can be encouraged to invite their adolescent child to share worries with them and with other caring adults in their lives, and to facilitate the adolescent's access to trustworthy information about the parent's illness, to the extent the teen desires it.

A family's ability to redistribute family roles fairly, with clear communication, and in ways that do not compromise the development of individual members, may also facilitate children's adjustment to a parent's long hospitalization.39, 52 The careful redistribution of roles may be particularly important for adolescent girls, as stress from increased family responsibilities was shown to account for one study's finding that adolescent girls with ill mothers were more distressed than any other group of children with an ill parent.34 Clinical experience suggests that adolescents, in particular, are frequently expected to ‘act their age’ and take on adult-like responsibilities when a parent is hospitalized or at home with impaired functioning. Some can indeed manage this, but parents need to be aware that adolescents’ capacities to meet these new expectations may fluctuate drastically. For example, the mother of a 16-year-old girl described how on most days, she had to ask her daughter ‘a million times’ to clear dirty dishes from her room and put away her clothes, but how one day she came home to find ‘the whole house smelling like Lysol’ after her daughter had scrubbed everywhere. It is helpful when parents explicitly tell their adolescents that they value their child's relationships outside the family as well as their role in the family, so that teens are not left feeling that parents do not understand their need to spend time with friends for support. Many adolescents and their parents will also need help in finding a balance between fostering these important relationships outside the home and spending time at home with the family or at the hospital visiting an ill parent. Often, setting realistic goals such as two evenings per week that are ‘family only’ times can help decrease conflict.

As with younger children, only a subset of adolescents coping with parental cancer will experience levels of distress in the clinical range (Table 3). A number of studies do strongly suggest that these adolescents experience more symptoms of anxiety and depression than teens without a parent with cancer,24, 25, 30, 48 but the results are equivocal about how much adolescents act out in response to parental illness. Christ et al.53 suggest that problem behaviors increase mainly in youths already evidencing such behaviors before a parent's illness rather than as a new response to the illness. It is safe to say that both boys and girls are susceptible to feelings of anxiety and depression, and to behaving impulsively or aggressively, but the majority continue to function well despite the stress of the illness. Parents should be made aware that adolescents often self-report feeling more anxious and depressed than their parents realize,24, 27, 32, 50, 54 particularly when a parent is ill. It is important that parents actively check in with their adolescents about their emotional experience, and not assume all is well just because an adolescent is not complaining.

Generally, parents should be encouraged to seek additional support for their children when they exhibit difficulties in more than one arena (home, school and friends) or for more than several weeks without improvement. A child's pediatrician and school guidance counselor are excellent resources with whom to start.

Opening Pandora's box

Both clinical experience and research suggest that children do best when parents communicate with them honestly and sensitively over the course of the parent's illness. Children in one study reported that talking about the cancer with parents, along with everyday things, helped them cope,45 and children in another study who were not told of a parent's cancer diagnosis were more anxious than the children who knew the diagnosis, even within one family.55 In another, adolescents who received information from family members and felt able to ask questions and discuss the cancer with parents adjusted better, whereas teens who felt responsible for providing information to other family members were more distressed.34, 35, 37

Despite the benefits of honest, sensitive communication, parents often find it extremely difficult to talk about cancer, both initially and in an ongoing way, with their children.51 As parents face the prospect of BMT/SCT, they frequently struggle with how to appropriately convey the risk of the procedure and the reasons for the extended hospitalization, and are particularly fearful that their children will ask about the possibility of the parent's death.

Given the scarcity of child mental health providers, and families’ need for help in supporting their children's coping, the BMT team has a critical role to play. Similar to an excellent medical consultation, parents’ sensitive communication with children can enable children to share hidden feelings aroused by the separation, help a child correct distorted notions about causes or consequences of cancer, support the child in preparing realistically for changes in role allocation in the family, and express the parents’ trust in the child's ability to cope.55, 56 Fortunately, parents are often quite open to ideas about how to talk with their children, particularly when they can be helped to see that far from failing to protect their children by sharing difficult information, they are taking the first step in helping their children actively cope with the situation. As clinicians, we can convey the importance of honest and sensitive communication by both talking with parents about the reasons it helps children's coping, and modeling it ourselves.

First, start by asking about a patient's children: ‘What are your children's names and ages? Would you tell me a bit about each one's personality? What have you told them (or are you planning to tell them) about your illness and this particular treatment? Do you have specific concerns about any of your children while you are in the hospital? With whom could you speak about these concerns?’ Then, listen. Share some developmental information as outlined earlier in this paper to help parents anticipate a child's potential reactions.

When discussing the complications a patient may experience both short and long term, remember that parenting, as well as professional life, is a vital context for patients with children at home, and help parents to recognize and plan for potential disruptions in their ability to parent as usual.

Learn about resources in your setting/community. Knowing there is someone to whom a parent can be referred if they report a child is in a lot of distress, can help clinicians feel confident that parenting concerns will not hijack too much of the precious time available with a patient. The oncology team cannot treat the child but can help parents recognize when someone else will need to do so. Clinicians can suggest that parents speak with the child's pediatrician, the school guidance counselor, a clinician in the hospital's Child Psychiatry department or an oncology nurse or social worker with particular interest in children's coping. A list of written resources that may be helpful to families follows at the end of this article.

Hospitals can make a greater effort to prioritize the needs of families by encouraging staff to do a few things that facilitate children's visits. Having a room available for children to play in after they tire of being in the parent's room with games or art supplies available is helpful. Families also find it helpful to be able to check in with a team member about how the patient is doing, before bringing children for visits, to reduce the chance that the children will see the ill parent too medically compromised. If a parent is delirious, it is best to choose another day to visit. There may be one person on the BMT/SCT team that has a particular interest in parenting and children; if so, that person could be encouraged to develop some expertise in this area, to learn about the resources in the area and to share the team's experience with other teams and other medical centers.

Closing – but not locking – Pandora's box

Worries about children can often be addressed and contained, for the moment, by offering parents some concrete, practical suggestions. Clinicians will find that as they talk with families they will accrue an array of their own specific recommendations, tailored to the ages of the affected children. Some of the guiding principles we rely upon include:

Secure adequate support for parents

We often remind parents that on airplanes, ‘Passengers traveling with small children are instructed to first put their own oxygen mask in place, then their child's.’ Parents can be encouraged to ask for help they need taking care of themselves, so they can continue to care for their children in the ways they want. This includes finding support in processing their own emotional reactions to cancer and the upcoming hospitalization, so when they talk with their children about BMT/SCT, their own emotions occur at levels that promote the child's organized responding and do not undermine sensitive parenting.57

Communicate openly and honestly

Clinicians familiar with the SPIKES protocol58 for breaking bad news to patients already have in their repertoire a powerful tool for helping parents talk to their children. Just as knowing these guidelines may help reduce clinician anxiety about difficult conversations, parents may also feel more confident about broaching the topic of their impending hospitalization with children when they have an organizing framework. Table 4 shows how the SPIKES protocol can be slightly modified and shared with parents. Although children do not need to be informed about every fluctuation in a parent's status once in patient, they should be informed of major changes, particularly when such changes would be obvious during a visit or phone conversation. Children asking questions about whether a parent will die can be reassured that the adults are hopeful this treatment will help, but that no one is certain about how things will go, and that the adults will keep them informed about how the parent is doing. A child not asking directly about death can be told that the treatment will make Mom or Dad very sick, maybe even sicker than the earlier chemotherapy, but that everyone hopes the parent will eventually be much better again.

Table 4 SPIKES58 protocol modified to guide parents in talking with children about BMT

Protect family time

Remind families that they can benefit from making time to be together as a family, even when one parent is in the hospital. Children report that talking about everyday events, playing games or even just watching TV together, help them feel better.45 If children can visit, it can help for them to bring activities to do with the parent, such as short board games, or looking at photo albums, funny movies or home videos of the child's activities together. When children cannot visit, parents can maintain regular phone contact and check in about the child's day – simple questions about how the spelling test or soccer game went can go a long way toward helping children feel connected to an absent parent. If children are too young to talk themselves, parents can check in with the caregiver, hear about the details of the child's day and share the parent's own expertise about the child. The PACT team sometimes provides videophones so that parents and children can see each other while talking; this seems particularly helpful with preschool and school-age children. During family time, it is helpful to limit phone calls and visits from friends and extended family.

Maintain normal routines and contexts

Both children and adolescents report that maintaining regular activities, time with friends and routines at school help provide a sense of normality about life.43, 45, 59 Parents can be encouraged to think in advance of the hospitalization about how they can most easily maintain these routines, and whom they can ask for help in doing so. Good sources of support often include parents of their children's friends. Having one or two familiar substitute caregivers, rather than many rotating through, is easier on young children.

Having a parent undergo BMT/SCT poses a significant challenge for children and adolescents, one that we cannot expect them to manage unaided. Our clinical experience with the PACT program has demonstrated that parents are frequently extremely concerned about the prospect of extended separations from their children, yet there is a dearth of research documenting the specific sources of distress for parents and the impact of these separations on children. We believe this area is fertile ground for future research. Important questions include how parents describe BMT/SCT to their children, how children's behavior and emotional functioning is affected during the parent's hospitalization, the extent of parents’ distress about being separated from children and what aspects of the separation are most distressing, how having children affects post transplant recovery at home, and most of all, what types of interventions are most successful in ameliorating parent and child distress. As research continues to accrue documenting the impact of BMT/SCT on quality of life, studies could easily begin to address several of these questions. Simply asking whether a patient has children at home and testing parental status as a potential predictor of distress or well-being, in both the patient and the spouse, would be an excellent start.

We do not serve our patients well by ignoring their parenting challenges. Addressing these challenges sensitively and knowledgeably requires a commitment of resources. No one expects an oncologist to be a child development expert, but acknowledging that parenting issues are important, learning about supports for parents in one's own community, and being willing to spend time and money to educate staff and develop in-house resources, can go a long way. Our clinical experience is that talking about parenting concerns does not open a Pandora's box that cannot be closed, but to the contrary, opens the door to strong alliances with patients, excellent clinical care and hope that the future can be bright for the children of our patients.

Resources

Books

Rauch PK, Muriel AC (2006). Raising an Emotionally Healthy Child when a Parent is Sick. McGraw-Hill: New York.

McCue K (1994). How to Help Children Through a Parent's Serious Illness. St Martin's Griffin: New York.

Harpham WS (1997). When a Parent Has Cancer: A Guide to Caring for Your Children. Reprint edn. Harper Paperbacks: New York, NY.

Articles

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

Rauch PK, Muriel AC, Cassem NH. Parents with cancer: Who's looking after the children? J Clin Oncol 2002; 20(21): 4399–4402.

Websites

American Cancer Society (www.cancer.org) offers information on talking to children at several stages of a parent's illness in the ‘Patients, Family and Friends’ section of their website, as well as descriptions of why BMTs are used, and what the side effects are, that can be helpful background for parents preparing to talk to older children.

Kids Konnected (www.kidskonnected.org) offers a hotline for kids, summer camps, and resources for children and families.

Massachusetts General Hospital Parenting at a Challenging Time program (http://www.massgeneral.org/cancer/resources/support/pact.asp).

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Correspondence to C W Moore.

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Moore, C., Rauch, P. Addressing parenting concerns of bone marrow transplant patients: opening (and closing) Pandora's box. Bone Marrow Transplant 38, 775–782 (2006) doi:10.1038/sj.bmt.1705522

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Keywords

  • parental illness
  • children's coping
  • family communication

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