Paula K. Rauch

The importance of parenting concerns among patients with cancer

Almost one quarter of all cancer patients in the United States is estimated to have children under 18-years-old living with them. However, there is limited research on how childrens functioning is affected by parental cancer, and the impact of parenting concerns on treatment decisions. This paper will review the literature and hypothesize about why addressing the needs of the children has not been part of routine cancer care. In addition, we will make a case for the importance of including parenting issues in cancer care, and in assessments of treatment decision-making and quality of life. We also describe a clinical program that is attempting to address these issues, and offer practical recommendations for oncologists who want to help parents with cancer and their partners support their children through the challenges of cancer treatment.

Screening for Psychosocial Dysfunction in Pediatric Dermatology Practice

The Pediatric Symptom Checklist, a brief psychosocial screening questionnaire, was used in a multi-center study of pediatric dermatology clinics (n=377). Overall rates of positive screening indicated that approximately 13% of patients screened positive, a rate similar to findings in primary care pediatric settings. Examining the sample in greater detail demonstrated that children whose dermatologic disorder is perceived to have a greater impact on their appearance are at higher risk for psychosocial dysfunction.

When a parent is injured or killed in combat

When a service member is injured or dies in a combat zone, the consequences for his or her family can be profound and long-lasting. Visible, physical battlefield injuries often require families to adapt to long and stressful rounds of treatment and rehabilitation, and they can leave the service member with permanent disabilities that mean new roles for everyone in the family. Invisible injuries, both physical and psychological, including traumatic brain injury and combat-related stress disorders, are often not diagnosed until many months after a service member returns from war (if they are diagnosed at all—many sufferers never seek treatment). They can alter a service member’s behavior and personality in ways that make parenting difficult and reverberate throughout the family. And a parent’s death in combat not only brings immediate grief but can also mean that survivors lose their very identity as a military family when they must move away from their supportive military community. Sifting through the evidence on both military and civilian families, Allison Holmes, Paula Rauch, and Stephen Cozza analyze, in turn, how visible injuries, traumatic brain injuries, stress disorders, and death affect parents’ mental health, parenting capacity, and family organization; they also discuss the community resources that can help families in each situation. They note that most current services focus on the needs of injured service members rather than those of their families. Through seven concrete recommendations, they call for a greater emphasis on family-focused care that supports resilience and positive adaptation for all members of military families who are struggling with a service member’s injury or death.

Measuring Psychosocial Distress and Parenting Concerns among Adults with Cancer: The Parenting Concerns Questionnaire

A 2‐phase, mixed methods study was conducted to develop a Parenting Concerns Questionnaire (PCQ) for adults with cancer. Limited information about this area of psychosocial distress highlights the need for a measurement tool that can identify adult oncology patients with heightened parenting concerns who could benefit from additional intervention.

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

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 childrens 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 childrens reactions to cancer and BMT/SCT can improve the experience of the patient and the patients 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 patients 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.

Parenting changes in adults with cancer

Children whose parents have cancer are at risk for psychosocial difficulties; however, the mechanisms are not well understood. This cross‐sectional study sought support for a model connecting parental cancer to child distress through its impact on parenting self‐efficacy beliefs and parenting behaviors by examining relations among parental illness, quality of life/parent functioning, parenting efficacy beliefs, and concerns about childrens emotional distress.

Early-onset dementia: diagnostic considerations and implications for families.

Ms. A is a 43-year-old widowed woman brought to the psychiatric emergency room by her older son after she was evicted from the hotel room where she was living. He stated that she could no longer ta...

Parenting with Cancer I: Developmental Perspective, Communication, and Coping

An estimated 2.85 million children in the United States are living with a parent who has been diagnosed with cancer [1]. One-third of patients with breast cancer have dependent children [2]. For these parents, often their biggest worry is what impact their cancer will have on their children. Unfortunately, it is not common for parents to receive support from clinicians about these concerns. Our aim for this chapter is to familiarize clinicians with the common worries that parents have and empower them with strategies they can use to help support parents in this difficult time. The content discussed in this chapter is derived from the accumulated clinical experience of the team of clinicians comprising the Parenting at a Challenging Time (PACT) Program at the Massachusetts General Hospital (MGH) [3–21]. This chapter will present information that clinicians can use to take a parenting history, and to use a developmental perspective to guide parents at different stages of illness, including new diagnosis, treatment, survivorship, and end-of-life. Practical strategies for parenting challenges such as communication with children about illness, preserving family time, and harnessing support networks will be addressed so that clinicians are equipped with tools they can use to directly impact parents with cancer.

Parenting with Cancer II: Parenting at Different Stages of Illness

In the period immediately following a new diagnosis, parents often describe being in a state of shock, similar to the aftermath of a traumatic event. This overwhelming distress may cause parents to feel that they cannot think straight, their world has turned upside down, or that their sense of time and space has been altered. During this time, caring for themselves and gathering medical information are priorities. As much as possible, steadying themselves with reminders to take one day at a time, or even one hour at a time, can be crucial. It may be important to wait until this acute period has passed and parents once again have their feet underneath them before attempting to discuss the diagnosis with their children. It can be challenging to find an appropriate balance between allowing time for some emotional stabilization, while not letting too much time go by that parents risk children picking up on cues or overhearing conversations about the illness.

Psychosocial adjustment in school-age girls with a family history of breast cancer

OBJECTIVE: Understanding how young girls respond to growing up with breast cancer family histories is critical given expansion of genetic testing and breast cancer messaging. We examined the impact of breast cancer family history on psychosocial adjustment and health behaviors among >800 girls in the multicenter LEGACY Girls Study. METHODS: Girls aged 6 to 13 years with a family history of breast cancer or familial BRCA1/2 mutation (BCFH+), peers without a family history (BCFH–), and their biological mothers completed assessments of psychosocial adjustment (maternal report for 6- to 13-year-olds, self-report for 10- to 13-year-olds), breast cancer–specific distress, perceived risk of breast cancer, and health behaviors (10- to 13-year-olds). RESULTS: BCFH+ girls had better general psychosocial adjustment than BCFH– peers by maternal report. Psychosocial adjustment and health behaviors did not differ significantly by self-report among 10- to 13-year-old girls. BCFH+ girls reported higher breast cancer–specific distress (P = .001) and were more likely to report themselves at increased breast cancer risk than BCFH– peers (38.4% vs 13.7%, P < .001), although many girls were unsure of their risk. In multivariable analyses, higher daughter anxiety was associated with higher maternal anxiety and poorer family communication. Higher daughter breast cancer–specific distress was associated with higher maternal breast cancer-specific distress. CONCLUSIONS: Although growing up in a family at risk for breast cancer does not negatively affect general psychosocial adjustment among preadolescent girls, those from breast cancer risk families experience greater breast cancer–specific distress. Interventions to address daughter and mother breast cancer concerns and responses to genetic or familial risk might improve psychosocial outcomes of teen daughters.