May 2020, Volume XXXIV, Number 2
Sharing a life-threatening diagnosis with children
Developing best practices
isclosing a cancer diagnosis is likely one of the hardest conversations that a parent ever has to have with their child. Many are unsure about how, when, and how much to tell their children. Worries about inducing fear, anxiety, and sadness in children lead many parents to keep their diagnosis a secret altogether. The following is a summary of what we know from extant (albeit limited) research, alongside a call-to-action for providers and scholars to further develop best practices for this critical life event.
Summary of literature: what do we know?
Initially disclosing one’s cancer—or any life-threatening illness—to a child places high psychological distress on parents and families. However, children who are informed about their parents’ disease—and who are able to talk about it openly—evidence lower rates of anxiety and depression. Children report that they want honest communication and straightforward information … from their parents and providers, in written materials, and on the internet.
It is also important to advance this communication and information sharing in an ongoing way—as a process, not as a singular event. In a parallel manner, expert guidance about how to talk with children about dating, sex, or finances is better when it is not done as a single moment in time (i.e., “the talk”). Parents do better by their kids when they engage in numerous conversations. Gazendam–Donofrio et al. (2009) confirmed this with the Parent-Adolescent Communication Scale (PACS). Clinician and scholar Tina Sellers sums it up: “It is better to have 100 one-minute conversations than it is to have one 100-minute conversation.” Further, when two parents are involved in a child’s life, it is important that both are engaged in diagnosis disclosure processes. Collective, inclusive, family-based conversations benefit both the child and the couple, insofar as dependent variables across both individual (e.g., depressive and anxious symptoms), and dyadic/family (e.g., perceived support, reduced conflict) levels follow.
Critique of literature
The principal challenge of developing best practices from this limited literature is exactly that: it is limited. This is evident by the paucity of published studies (in general) and—in the studies that do exist—a lack of theory in guiding scholarship, inconsistencies in methods and analyses, and relatively incomplete and/or imprecise findings.
Children report that they want honest communication.
More than half of the articles that we reviewed failed to use a theoretical lens. While theory does not always directly translate to practice, it can aid scholars in operationalizing their topic of interest, articulate the questions that they ask, determine which measures and methods are most appropriate to use, interpret study findings, and inform next steps in the investigations that they advance. Many studies evidence sampling bias, insofar as participant recruitment has only occurred in clinical settings. Patients/families who cannot access or afford regular care and/or those who have chosen not to seek or continue treatment secondary to advanced stages and incurability have not been considered. In addition, most studies to date have focused on mothers with breast cancer—thereby leaving out unique challenges that patients face when living or dying with a myriad of other types of cancer. Finally, inconsistent use of well-established assessment tools raises concerns about the validity and generalizability of what we do know. For example, several researchers have employed the Hospital Anxiety and Depression Scale (HADS) instead of better and more established tools, like the Patient Health Questionnaire-9 (PHQ-9) or the Generalized Anxiety Disorder 7 (GAD-7) assay.
Implications for providers
Health care professionals working with families in which a parent is diagnosed with cancer must consider each families’ unique relationships and situation when discussing the process of disclosing the disease to a child. Because talking about cancer is better framed as a process (not as an event), providers should help to create spaces and paths for open communication and trust through disclosure conversations and care/treatment discussions over time. Screening for increased psychosocial distress or decreased mental health should be implemented before and early into the disclosure process. These screenings can be helpful in our efforts to refer parents/families who may need additional support, especially when their needs fall outside of our own scope of practice.
It is also important for parents to give age-appropriate information to their children. Younger children (e.g., eight years old or less) do not need as much detail as older children do. Parents should prepare in advance—with help from their providers—to ensure they can calmly communicate and answer questions with confidence. Parents need guidance to find resources for an age-appropriate vocabulary when discussing diagnosis and treatment plans. Parents might explain the word “cancer” as “bad cells,” and frame unknowns in a matter-of-fact fashion (e.g., “We don’t know if the treatment will work” or “We are not sure how long the treatment will last”), which is better than offering idealistic projections (e.g., “We are sure that Mom will be okay”). Focusing communication around guilt reduction, expressing guarded hope, and talking about how the diagnosis will impact family members’ lives can help a child—and others—to cope better. Providers who are guiding parents during disclosure conversations should understand basic developmental levels, and talk with parents before, during, and after early conversations begin.
Professionals from multiple disciplines (e.g., palliative care, hospice, family medicine, and behavioral health) are charged with a duty to offer guidance and support that focuses on effectively communicating a diagnosis of cancer, and to involve children in those conversations. Nurses, medical family therapists, psychologists, and family advocates are well suited to offer this support. Health care teams should employ both medical and mental health providers in integrated care team formats so as to meet and engage with parents and children in a manner customized to their medical literacy.
A call to action
Utilizing theory to frame future studies will serve to advance both a) the new knowledge we gain and b) the support/care that we provide to parents and families who are navigating cancer. For example, the Circumplex Model of Marital and Family Systems, informed by Family Systems Theory, was created by Olson and colleagues (1989, 2000, 2019) to bridge longstanding gaps between research, theory, and practice. The model considers respective levels of families’ cohesion and flexibility, alongside communication as a facilitating dimension of these two continua. Cohesion encompasses the emotional bonds between family members; it is assessed across disengaged, separate, connected, and enmeshed levels. Flexibility relates to families’ capacity to adapt to change; it is assessed across rigid, structured, flexible, and chaotic levels. Communication encompasses family members’ listening and speaking skills, capacities for self-disclosure, clarity, and ability to stay on topic. While caution about making presumptions vis-à-vis cultural/ethnic norms around family functioning is indicated, generally families who are “balanced” in cohesion and flexibility (i.e., in the middle of these continua) do better when faced with developmental and/or situational stress.
Talking about cancer is better framed as a process (not as an event).
Assessing families’ cohesion, flexibility, and communication is possible through both paper-and-pencil tests (FACES IV) and observational assays (Clinical Rating Scale). Data derived could shed light on how these foci function for parents as they traverse difficult conversations about cancer, its treatment, and its outcomes (generally), and enable us to support the manners in which they do so vis-à-vis unique cultural beliefs around illness and dying processes (specifically). For example, the manners in which we support a family whose cohesion is disengaged, flexibility is rigid, and communicative facility is low will look different than the ways we engage with one whose cohesion is enmeshed, flexibility is structured, and communicative facility is high. Relatedly, the ways in which we support a family that inhabits a collectivist culture that ascribes to tenets of animalism and ancestral spirits will look different than the ways we engage with one who inhabits an individualist culture and does not believe in an afterlife.
There is little doubt that disclosing a cancer diagnosis is one of the hardest conversations that a parent ever has to have with their child. Providers can support families by equipping parents with knowledge and encouragement to talk openly with their kids early in the illness journey—and to continue talking along the way in a manner that is compassionate, open, and matter-of-fact. Moving beyond these baseline understandings, more research is needed to inform—and assess—best practices in the manner(s) that we employ to guide parents through this challenge. Attention to families’ general functioning across interpersonal cohesion, flexibility, and communication will be helpful, paired with careful considerations related to cultural mores, ethnic traditions, and faith-based belief systems.
To read the full critical review upon which this article is based, contact Vaida Kazlauskaite at email@example.com.
American Cancer Society (2016). “How to tell a child that a parent has cancer”: https://tinyurl.com/mp-am-cancer-society.
National Comprehensive Cancer Network (2020). “How to tell your children about your cancer diagnosis”: https://tinyurl.com/mp-nccn2.
ACS Journals: Cancer (2009). “Parent-child communication patterns during the first year after a parent’s cancer diagnosis”: https://tinyurl.com/mp-acs-journals.
Journal of Family Theory & Review (2019). “Circumplex model of marital and family systems: An update”: https://tinyurl.com/mp-jftr2.
Vaida Kazlauskaite, MS, LAMFT, is a doctoral candidate at the University of Minnesota in the Department of Family Social Science. Her primary clinical and research interests focus on advancing supportive methods to assist families in navigating cancer diagnoses and treatment.
Tai Mendenhall, PhD, LMFT, is a faculty member at the University of Minnesota in the Department of Family Social Science. His primary interests focus on community-based participatory research to support families as they cope with chronic illnesses.
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