Adaptation and Psychometric Evaluation of the Parenting Concerns Questionnaire-Advanced Disease.

PURPOSE: When patients with advanced cancer have minor children (age < 18), their health-related quality of life is closely linked to their concerns about the impact of progressive illness and death on their children. The Parenting Concerns Questionnaire (PCQ), a validated measure for parents with cancer, does not capture the full range of concerns in advanced cancer. The aim of this was study was to adapt and establish psychometrics for the PCQ for advanced disease (PCQ-AD). METHODS: After generating an initial item-bank, we conducted concept elicitation interviews with clinicians (n = 8) and cognitive interviews with patients (n = 23) for face validity. New items addressed concerns about impact of parental death, making every moment count, communication, and financial impact of cancer on children. We administered 21 candidate items to 151 parents with advanced cancer. We conducted confirmatory factor analysis (CFA), calculated internal consistency, and assessed convergent and known-groups validity. RESULTS: We removed 8 redundant items due to residual covariation between items. CFA of the 13-item PCQ-AD demonstrated satisfactory fit (CFI = 0.971, TLI = 0.966, RMSEA = 0.081) and high internal consistency (Cronbach's alpha = 0.94, composite reliability = 0.95). The PCQ-AD demonstrated convergent validity and known-groups validity; patients with poor functional status reported higher scores than patients with better functional status (Cohen's d = 0.56, p = 0.002). CONCLUSION: Adaptation of the PCQ yielded the addition of constructs important in advanced cancer. The PCQ-AD appears to be a reliable and valid measure of parenting concerns in advanced cancer, but future studies are needed to examine measure performance in diverse populations and responsiveness of the PCQ-AD to interventions.

Talking With Children About Prognosis: The Decisions and Experiences of Mothers With Metastatic Cancer.

PURPOSE: Parents with metastatic cancer report unique concerns and challenges when discussing their illness with their minor children. Greater understanding of parents' communication experiences can facilitate these discussions. This study aimed to describe the challenges, approaches, and decisions related to discussing prognosis among a sample of mothers with metastatic cancer. METHODS: We conducted a web-based cross-sectional survey assessing the psychosocial concerns of 224 women with metastatic cancer who had minor children. This analysis focused on participant responses to structured and open-ended questions addressing communication with their children. We used descriptive statistics to summarize responses to the structured questions and qualitative content analysis for responses to open-ended questions. RESULTS: Nearly 80% (n = 176) reported they had discussed their prognosis with at least one of their children; 79% identified at least one barrier to these discussions. The most common obstacles were participants' uncertainty about their illness trajectory (43%) and emotional distress associated with these conversations (41%). Qualitative analyses revealed three principles that guided mothers' communication decisions: commitment to honesty and protection; child developmental readiness; and beliefs about the right time. Approaches to discussing prognosis included total honesty, using the language of chronic illness, gradual disclosure, waiting for questions, and emphasizing hope, love, and reassurance. CONCLUSION: This study provides further evidence of the complexity and challenges of parental communication with their children about metastatic cancer. There is a need for both clinicians and researchers to identify, test, and implement evidence-based strategies to assist ill parents with their communication concerns.

Preventative Health and Risk Behaviors Among Adolescent Girls With and Without Family Histories of Breast Cancer.

PURPOSE: To compare health behaviors (smoking, alcohol use, fruit and vegetable intake, and exercise frequency) and breast self-exam (BSE) between girls with breast cancer family history (BCFH+) and without (BCFH-) and assess associates of behaviors across all girls. METHODS: A total of 208 BCFH+ girls (11-19 years old), with first- or second-degree relatives with breast cancer or a mother with a BRCA1/2 mutation, and 112 BCFH- peers reported their health behaviors, beliefs, and psychosocial function. RESULTS: Despite higher BCFH+ girls' greater perceived breast cancer risk, there were no differences between BCFH+ and BCFH- girls on diet, exercise, alcohol initiation, or BSE. BCFH+ girls were slightly more likely to report trying cigarettes (11% vs. 5%, p = .04). In multivariable models with all girls, categorical associations with behaviors included the following: developmental and demographic factors with smoking, alcohol, diet, and exercise; family breast cancer history and experience with smoking, alcohol, and diet; psychosocial factors with smoking; girls perceptions of cancer controllability and mother support for health behaviors with alcohol, diet, exercise, and BSE; and mother behaviors with diet. CONCLUSIONS: Adolescent girls from BCFH+ families reported similar health behaviors to BCFH- peers, signaling that they are not translating their higher perceived risk into cancer control behaviors. Both uncontrollable (i.e., breast cancer experiences) and modifiable factors relate to health behaviors and warrant further investigation. Results indicate that interventions with teens and parents that target modifiable variables such as controllability perceptions, maternal modeling, and communication may relate to better health behaviors and reduced future breast cancer risk.

Examining the Relationship Between Parent and Child Psychopathology in Treatment-Seeking Veterans.

This study aimed to examine: (1) the relationship between parental psychopathology and child psychopathology in military families and (2) parenting sense of competence as a mediator of the relationship between veteran psychopathology and child psychopathology. As part of their standard clinical evaluations, 215 treatment-seeking veterans who reported having a child between the ages of 4 and 17 were assessed for psychopathology (posttraumatic stress disorder, depression, anxiety, and stress), their sense of competence as a parent, and their child's psychopathology (internalizing, externalizing, and attentional symptoms). A path analysis model examining parenting sense of competence as a mediator of the relationship between veteran psychopathology and child psychopathology showed significant indirect effects of veteran depression on all child psychopathology outcomes via parenting sense of competence. Parental sense of competence may be a critical mechanism linking veteran depression and child psychopathology, and may therefore be an important target for intervention.

Treating Veterans and Military Families: Evidence Based Practices and Training Needs Among Community Clinicians.

Little is known about the capacity of community providers to provide military informed evidence based services for posttraumatic stress disorder (PTSD). We conducted a regional, web-based survey of 352 community mental health care providers that sought to identify clinical practices, training needs, and predictors of evidence based treatment (EBT) use for PTSD. Overall, 49 % of providers indicated they seldom or never use a validated PTSD screening instrument. Familiarity with EBTs, specifically prolonged exposure (PE; χ2(4) = 14.68, p < .01) and cognitive processing therapy (CPT; χ2(4) = 4.55, p < .05), differed by provider type. Of providers who received training in PE or CPT (N = 121), 75 % reported using treatment in their practice, which was associated with having received clinical supervision (χ2 (1) = 20.16, p < .001). Widely disseminated trainings in empirically supported PTSD assessment and treatment, and implementation of case supervision in community settings are needed.

Psychosocial Adjustment and Perceived Risk Among Adolescent Girls From Families With BRCA1/2 or Breast Cancer History.

PURPOSE: To evaluate the impact of breast cancer family history and maternal BRCA1/2 mutation on the psychosocial adjustment and perceived risk in girls age 11 to 19 years old. MATERIALS AND METHODS: Girls age 11 to 19 years old with one or more relatives with breast cancer or a familial BRCA1/2 mutation (breast cancer family history [BCFH] positive, n = 208; n = 69 with BRCA1/2-positive mother), peers (BCFH negative, n = 112), and their mothers completed assessments of psychosocial adjustment, breast cancer-specific distress, and perceived risk of breast cancer. RESULTS: General psychosocial adjustment did not differ significantly between BCFH-positive and BCFH-negative girls, either by self-report or mother report, except for higher self-esteem among BCFH-positive girls (P = .01). BCFH-positive girls had higher breast cancer-specific distress than BCFH-negative girls (P < .001), but girls from BRCA1/2-positive families did not differ from other BCFH-positive peers. BCFH-positive girls were more likely to report themselves at increased self-risk for breast cancer in adulthood than BCFH-negative peers (74% v 33%, respectively; P ≤ .001). Girls from BRCA1/2-positive families were more likely than other BCFH-positive and BCFH-negative peers to report themselves at increased risk (P < .001). In all groups, perceived risk of breast cancer was associated with older age. Higher breast cancer-specific distress among adolescent girls was associated with higher self-perceived risk of breast cancer and higher maternal breast cancer-specific distress. CONCLUSION: Adolescent girls from BRCA1/2-positive and breast cancer families have higher self-esteem and do not have poorer psychosocial adjustment than peers. However, they do experience greater breast cancer-specific distress and perceived risk of breast cancer, particularly among older girls. Understanding the impact is important to optimize responses to growing up in families at familial and genetic risk for breast cancer, particularly given the debate over the genetic testing of children for cancer susceptibility in adulthood.

Parenting changes in adults with cancer.

BACKGROUND: 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 children's emotional distress. METHODS: One hundred ninety-four adult oncology outpatients with children who were 18 years old or younger completed questionnaires assessing their health-related quality of life (Functional Assessment of Cancer Therapy-General), depression and anxiety symptoms (Hospital Anxiety and Depression Scale), overall distress (Distress Thermometer), and parenting efficacy beliefs and parenting concerns (Parenting Concerns Questionnaire). RESULTS: Parenting efficacy scores for parents and coparents declined significantly after diagnosis. This decline correlated with more visits to a medical clinic, treatment with intravenous chemotherapy in the past month, poorer health-related quality of life, and more depression and distress. Parents experiencing the most concern about the impact of mood, physical limitations, and changes in routines on their children experienced the biggest declines in their own sense of efficacy as parents and in their belief in their coparent's efficacy. Finally, declines in parenting efficacy beliefs correlated with parental concerns about children's emotional distress about aspects of the parent's illness. CONCLUSIONS: This study highlights the importance of identifying and addressing parenting concerns to alleviate patient distress, and it may help to guide future intervention efforts.

NCCN roundtable: talking to children about cancer.

A roundtable presentation at the NCCN 19th Annual Conference focused on the child's experience when a parent has cancer and concluded that honest communication, appropriate to the child's age and temperament, is essential, and that oncology providers should institute programs that help families deal with the illness.

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.

BACKGROUND: 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. METHODS: Telephone focus groups were conducted with 16 oncology patients who had children 18 years old and younger. Group interview transcripts were analyzed to generate qualitative themes and candidate items for the PCQ. A 38-item version of the questionnaire was completed by 173 oncology outpatients who had children 18 years old and under. Participants also completed the Distress Thermometer, HADS (Hospital Anxiety and Depression Scale), and FACT-G (Functional Assessment of Cancer Therapy-General). Exploratory factor analyses revealed the emergence of 3 subscales of 5 items each, yielding a 15-item questionnaire. Associations between total PCQ scores, standardized measures of distress, depression, anxiety, quality of life, and demographic and illness characteristics were examined. RESULTS: The 15-item PCQ demonstrates good internal consistency (Cronbach's α = .83). PCQ scores were significantly associated (P < .01) with standardized measures of psychosocial distress (Distress Thermometer, HADS, and FACT-G) in the expected directions. Higher PCQ scores were associated with female sex, single parenthood, metastatic or recurrent cancer, subjective understanding of incurable disease, comorbid chronic health condition, and current mental health treatment. CONCLUSIONS: The PCQ proved a reliable and valid measure of parenting distress among cancer patients, and thus merits further study.

Children facing the death of a parent: the experiences of a parent guidance program at the massachusetts general hospital cancer center.

Children facing the death of a parent are facing a major upheaval, a loss that will bring them emotional pain and will resonate in different ways at important points throughout their lives. Given the proper supports, most children can expect to adjust well to this enormous change and live happy,productive, and meaningful lives. Although some risk factors for poor adjustment are fixed, the parents themselves often can address others effectively. Clinicians can help the parents of these children facilitate their children's best possible adjustment by emphasizing the principles of facilitating communication, minimizing disruption, preserving family time, and at-tending to their legacy. Clinicians place their children's behaviors within the context of their developmental stage and help the parents find language and an approach that feels comfortable to them. The goal is to help parents re-locate their bearings and realize they can use the parenting skills they al-ready have. Guided by the goal of protecting their children, these parents can find purpose and strength. Reframing their circumstances as a painful and unavoidable challenge, but one that they can actively face, is organizing and fortifying for these families buffeted by loss.

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 children's 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.

Between parent and child: negotiating cancer treatment in adolescents.

Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital, founded the Kenneth B. Schwartz Center. The Schwartz Center is a non-profit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to the patient, support to caregivers, and sustenance to the healing process. The center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. Cancer in adolescents presents an extra dynamic of psychosocial complexity. The case of a 19-year-old woman with acute myelocytic leukemia is discussed. Her disease was refractory to allogeneic transplantation, and she died with severe graft-versus-host disease. Ms. P and her mother established very different relationships with the team which supported them through the transitions in her care, and Ms. P was able to die at home, with hospice care. The personal connection with the team enabled a degree of positive adjustment through the nightmare of loss. The epidemiology of cancer in adolescents and paradigms of care are reviewed. Psychosocial aspects of adolescence, opportunities for personal growth and support, and the challenge of end-of-life care are discussed.