When a Patient with Cancer is a Parent

Practical Parent Guidance to Address Parenting Concerns and Enhance Parenting Skills to Support Child Coping

by Paula Rauch, MD

 

Every medical provider and mental health clinician who cares for adults needs to know how to guide parents in the essential ways to support the well-being of their children through the challenges of facing cancer. Approximately three million US children and teens live with a parent facing a cancer diagnosis, treatment, survivorship and sometimes untimely death. Many more have a grandparent or another important person caring for them and negotiating cancer related challenges. A startling one third of women with breast cancer are parenting children 18 years of age or younger. Close to twenty percent of all patients with cancer are parents of dependent children. Both clinicians who work with adults and clinicians who work with children need to be able to address this all-too-common parenting challenge. 

Parent guidance developed through decades of experience supporting parents with cancer provides valuable guiding principles for supporting parents facing other life-limiting illnesses such as ALS, MS, kidney disease and diabetes. Clinicians caring for families facing the new challenges of parents or grandparents with acute or long haul COVID-19 will also benefit from learning these key parenting principles. 

 

Addressing A Parent’s Cancer Diagnosis With Children:

 

Children and adolescents rely on stable routines to feel secure. These routines are often disrupted by a parent’s work-up, treatment schedule, and side effects, and unplanned medical events They are attuned to the emotional changes at home when parents are coping with the distress of a new diagnosis, the anxiety associated with advancing disease, or sadness if the end of life is approaching.  Talking openly with children in the age-appropriate gauge is essential for facilitating their healthy coping. This includes knowing how to share what is known and what remains uncertain. Parents need to maintain child-centered routines and schedules, when possible and prepare children, changes are necessary. Parents need guidance in ways to engage with a child’s school and afterschool community, extended family, and friends to craft the best support possible for each child. 

When patients with cancer are parents, they commonly turn to health care providers to answer key parenting questions. 

• “What do I say to my 5-year-old about my diagnosis?  
• Do I need to use the word cancer?”  
• “Will my child be traumatized by my hair loss?”  
• “How do I handle my upcoming hospitalization?”  

• “Should I send my children to stay with my parents during my surgery?”  
• “Should my children visit while I am hospitalized?”  
• “Should I contact their schools and what should I ask school personnel to do to support my child?”  
• “How do I keep my teen from learning about my cancer prognosis online?”  
• “When is a good choice for my child to travel for a long anticipated special event, or to stay at home?”  

• “How do I share with my teenager who is away at college and how often?”  
• Friends ask, “What can we do that will support your children through this difficult time?”  
• “What if my child asks me if I am going to die from this cancer?”  
• “Can I promise my child that I won’t die so she won’t be so scared?”  

When a parent faces cancer and turns to their trusted primary care and oncology medical teams or mental health clinicians for guidance, many clinicians are unsure how to answer these time sensitive and emotional questions. Parents may also reach out to their child’s pediatrician or mental health counselor with similar concerns and questions.  Most clinicians have not received practical, targeted training to address these parenting concerns.  

It is not enough to tell parents to be honest with their children. Parents need help to determine how and what to say to children of different developmental stages. Clinicians need to learn the language that communicates information about diagnosis, treatment, treatment side effects, potential recurrence, treatment decision making and sometimes how to talk about stopping treatment without conveying giving up and end of life decision making.  

 

Half A Million Children Face The Death Of A Parent To Cancer Each Year.

 

The illness and untimely death of a parent is undeniably a significant stressor for parents and for children.  But many parents wrongly assume that all children develop depression or anxiety disorders, turn to substances use, or are traumatized by parental loss. This is not what the data shows. Parents can be reassured by how well most children will cope through these difficult times when receiving warm attuned parenting, attention to maintaining their daily schedules and facilitating open communication.  

 

 A Course For All Medical Clinicians On Addressing A Cancer Diagnosis In A Family

 

When your Patient with Cancer is a Parent offers a practical approach to addressing these very questions and concerns. It is information that every mental health or medical clinician who works with adults should have. It is also information that every mental health and medical clinician who works with children needs. We know that the emotional health of parents and children facing a medical illness are tightly linked. Providing education to all clinicians so that they can provide guidance to parents can decrease the emotional distress of the loving parents and increase the resilience of their children and teens.

 

This course provides participants with a practical and targeted guidance for the intersection of normal child development, child coping, the mental health of parents and children, and the common challenges faced during a parent’s cancer care and sometimes death. Though the course focuses on the experience of parents with cancer, course participants will find that many of the general principles illustrated through the course will apply to parents with other illnesses, and to other parent-related challenges. The course is intended for medical providers and mental health clinicians who work with children or adults and offers 10 CEU or CME credits.  

The course curriculum is presented as a mix of didactics and videos, including engaging simulated interviews with actors playing the roles of a parenting couple facing a cancer diagnosis, recurrence, and end of life. Not only will participants come to understand the importance of the parent guidance offered for their care of patients, but they will also see the parent guidance intervention in action so that they can more easily implement the principles learned through the course. 

With support, the majority of children and teens will cope well through a parent’s cancer care, and beyond which is why it is so crucial that clinicians are trained to provide resilience enhancing nuanced guidance to parents with cancer and other serious medical conditions. Studies show that parents want this guidance from their health care team, and participants in this course will be prepared to offer this essential guidance.