A population-based estimate of cancer survivors residing with minor children

Authors


  • See referenced original article on pages 4395-401 this issue.

Abstract

A new approach is needed to address the concerns of 1.5 million cancer patients parenting nearly 3 million minor children. Principles from a parent-guidance program are offered to support families in cancer care settings with various levels of clinical resources.

Weaver et al1 have laid down the challenge for all of us. We must address the parenting concerns of cancer patients and the needs of their children. Their well documented study demonstrates that minimally 18% of cancer patients diagnosed in the past 2 years, and 14% of all cancer survivors, are parenting minor children. They estimate that more than 1.5 million cancer survivors have close to 3 million children at home and that more than half a million of these children are living with a parent in the early stages of cancer treatment and recovery.

If these numbers fully accounted for all the children affected, there would be reason enough to re-examine our strategies for psychosocial care of adults with cancer. But as the authors underscore, these data underestimate the numbers of affected children, most notably by omitting noncustodial parents and children who have already experienced a parent's death from cancer. Furthermore, the cutoff of 18 years of age that defines minors does not reflect the ongoing need for substantial parenting support for older adolescents (aged 19-23 years).

Parents with cancer are subject to a variety of stresses beyond the “usual” psychosocial concerns. Cancer has a ripple effect, with neighborhoods, schools, and even towns pulling together to support families. Yet despite the outflow of goodwill, many of the family's needs are frequently unmet. Given such broad impact, it is surprising that there has not been a more concerted effort to develop clinical approaches to meeting disparate family needs, to disseminate knowledge to providers in the best position to help, and to advance research on the psychosocial aspects of living with parental cancer.

There are clear barriers to developing psychosocial care for an affected child who is not the designated patient. In particular, there is no 1 point of entry for these children into any system of care. Many will not ever come to the attention of the mental health system. Children already in the mental health system because of pre-existing psychiatric conditions may be identified as being at greater risk because of a parent's cancer, but parents report that providers with expertise in treating a child's anxiety or depression frequently do not “get” the cancer experience. Elementary school teachers are frequently aware that a child is dealing with parental cancer but may lack the expertise to feel comfortable intervening, and teachers of older children may be unaware of family issues. Pediatricians will be aware only when told in a routine pediatric visit. Thus, children may not receive adequate help from their usual support systems.

In addition, parents often do not receive any psychoeducational guidance in how to minimize the impact of cancer on their children or to identify a child who requires extra support. The parent's oncologist and healthcare providers may view parenting issues as peripheral and time-consuming. Some providers may avoid talking about young children because they find it emotionally draining. Few have education in the specific impact on a child of a parent's health issues and may be reluctant to uncover issues without a clear plan to address them. Neither the parent's medical team nor the child's usual supports have a tradition of assuming responsibility for this sort of psychosocial care, so a new approach is needed.

Drawing from clinical experience in providing free parental guidance support to parents in a busy cancer center since 1997 (details at www.mghpact.org), we offer some principles for program planning that we believe apply in cancer care settings with various levels of clinical resources. First, a designated clinician should coordinate parenting resources, such as brochures, books, websites, and a list of experienced clinicians on site or in the community. Next, every new patient intake should include several questions about children and parenting concerns. By identifying parenting concerns early in the clinical experience, access to support can be provided at key times such as diagnosis, onset of treatment, disease recurrence, and end of life. The advent of the electronic medical record offers an opportunity to record parenting concerns as standard care. Automated cues that identify (for the child's pediatrician) medical issues affecting a parent or that notify a parent's primary care physician when a child has medical problems could highlight the relevance of an individual's medical issue to the well-being of other family members and increase the likelihood of well-coordinated care.

Finally, the opportunity for a parental guidance consultation should be provided to individual patients or families or in a multiple-parents setting. During these consultations, 2 groups of children may be discussed. The first comprises children already experiencing behavior problems, changes in mood, impaired function or pre-existing family dysfunction and who now are faced with the additional challenges associated with the parent's cancer. The second group consists of children who were basically on track before the parent's diagnosis of cancer and, absent this stressor, were not seen by parents as requiring counseling support.

The first group of children, with pre-existing dysfunction, will likely need individual mental healthcare or ongoing family therapy provided by mental health providers in the community. Some in this group may already have sought counseling support and, thus, have current or past mental health providers, whereas others will need referrals. Medical center staff may need to assist parents in community-based referrals in conjunction with a child's school professionals and pediatrician. Psychological resources for children and adolescents vary widely in different communities and are often not easy to access. Parents will appreciate and benefit from help with learning what is available, even when this is less than ideal. Once connected, community providers who care for these children may benefit from consultation with the cancer center psychosocial care team, who can highlight illness-related challenges the family is facing.

The second group of children, who were functioning well before a parent's cancer diagnosis, may be targeted for care that relies on parental guidance to anticipate and address the common challenges faced by children of different ages and temperaments. By educating parents in a resiliency-based model that includes mobilizing a family support system, maintaining normal routines, and communicating openly, parents can be empowered to help their children to successfully cope with the parent's treatment and survivorship. This type of guidance provided to parents as part of their cancer care is well suited to being offered in short-term interventions wherever the parent with cancer receives care.

Support needs to be provided now although much remains to be understood about what types of interventions best serve parents and children, where they are most successfully offered, and what outcomes are most usefully targeted. Fortunately, in the past decade, research interest in the impact of parental cancer on children and families has increased and is beginning to provide information that can inform interventions. For instance, several qualitative studies suggested that children worry about their ill parents more than parents may know,2, 3 use a range of coping strategies to keep life as normal as possible,2-4 and appreciate communication about the parent's illness.4-6 Larger-scale studies using standardized measures have demonstrated that a parent's cancer can be distressing to children of all ages7, 8 and that its impact is partly moderated by family cohesion, communication, the quality of the parents' relationship with each other, and parents' psychosocial functioning (particularly maternal depression).9-13

There remains a great need for longitudinal research to identify the range of developmental trajectories experienced by children living with a parent's cancer and whether some children, with adequate support, emerge with new strengths such as enhanced problem-solving skills or richer support networks. To improve interventions, we also need to better understand which risk factors are most readily modified and whether doing so actually changes outcomes for families. At this point, for example, no data exist to tell us whether changing a family's communication style is any more effective than increasing its social support in promoting children's and parents' positive adjustment to cancer. Without such information, it is difficult to know which intervention strategies to invest in most fully.

The ways that parenting minor children influence adults' adaptation to cancer must also be better understood, so that we can adequately address the quality of life issues now recognized as an essential components of cancer care. Parenting concerns can have a significant impact on quality of life for both patients and well parents. For example, distress about changes in one's own parenting style or a child's functioning may increase a parent's risk for anxiety or depression. In turn, maternal depression—in the patient or other parent—is a risk factor for children's poorer mental health and reduced family cohesion.11, 14, 15 There may be unique and unrecognized parenting concerns in parents who are survivors of childhood cancer, who were almost 12% of survivors with minor children in Weaver et al's analysis. Thus, there is a need to assess the range of parenting-related concerns, the intensity of parenting-related distress, and the relation between such distress and overall quality of life in both the patient and the other parent. A questionnaire to assess parenting concerns, the Parenting Concerns Questionnaire, has been developed and will be available shortly for use in clinical care and research.16

There is an important role for advocacy in identifying both parents with cancer and their children as at risk, sensitizing a range of providers to their situation, determining how best to address their needs, and then doing so. A few conditions facilitate the creation of a supportive network for parents and children. In our clinical experience, oncologists feel more comfortable introducing the topic of parenting when they have received some basic education in practical recommendations for parents and are able to refer patients to psychosocial clinicians for further guidance. In addition to educational opportunities directed toward healthcare providers, there is a need for community-based partnerships to fund the education of the many important adults in the lives of children. Most of these individuals, such as teachers, after-school program staff, coaches, and religious school teachers, who provide direct care to children, are unlikely to be able to afford expensive education or training in a distant location. Yet, it is these caring adults to whom many children will look for guidance when their home lives are disrupted or uncertain.

We must find ways to make a compelling case to direct funding to clinical care, education, and research to address the needs of children facing the challenges of a parent's cancer and sometimes untimely death. We have found that many recommendations, based on lessons learned from working with families in which a parent has cancer, are recognized to be valuable for families facing other challenges and transitions, such as having a parent serving in the military, a family member with a noncancer medical condition such as multiple sclerosis, or coping with a major change in financial status or a difficult divorce. A much larger number of families than the 1.5 million identified among cancer survivors also face challenges that lead to insecurity about the future, disrupted schedules, and changes in each family member's roles and responsibilities. Considering all these families in aggregate may be a compelling strategy for raising consciousness about the need to address these challenges and equip all of us with the best ways to provide support. This is an area ready for change and filled with opportunity to make a difference in the lives of children and parents.

CONFLICT OF INTEREST DISCLOSURES

The authors made no disclosures.

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