Psychometric properties of the Swedish version of the Parenting Concerns Questionnaire in parents with cancer.

BACKGROUND AND PURPOSE: Parenting concerns can be a major source of distress for patients with cancer who are parents of dependent children; however, these are often not addressed in health care. The Parenting Concerns Questionnaire (PCQ) is an instrument designed to assess parents' worries about the impact of cancer on their children and their ability to parent during this time. The Swedish version of the PCQ has, however, not been evaluated. This study therefore aimed to examine the psychometric properties of the PCQ in a sample of Swedish parents with cancer. MATERIAL AND METHODS: A sample of 336 patients with cancer having dependent children (≤18 years) were included in a cross-sectional web-based survey. Participants completed questionnaires assessing parenting concerns, depression, anxiety, and stress symptoms (DASS); self-efficacy, family functioning (FAD-GF); and sociodemographic and clinical characteristics. Descriptive analyses, as well as reliability and validity analyses, were conducted followed by a confirmatory factor analysis of the factor structure proposed by the authors of the original version of the PCQ. RESULTS: The majority were mothers (94.9%) with breast cancer (66.4%) aged 40-50 years (59.5%). The results showed evidence for convergent, criterion, and known group's validity, but the original three-factor structure of the PCQ was not fully supported by confirmatory factor analysis. INTERPRETATION: Evaluating parenting concerns may be an important step towards identifying patients who could benefit from targeted psychosocial interventions. However, the PCQ may require some further refinement to fully capture the breadth of parenting concerns in parents with cancer in different settings.

What do surviving children wish for from a dying parent? A qualitative exploration.

Legacy may play an important role in how children integrate the loss of a parent. Sixteen adults (19-40 years old, 69% women) who experienced the death of a parent from an illness before age 12 were interviewed, exploring legacies from their deceased parent. Transcribed interviews were iteratively analyzed by three independent coders. Extracted themes described their experiences and wish for remembrances and specific communication left for them, information about the parent's values and feelings about them, and personal possessions. This study provides novel data about legacies that bereaved children wish for in adulthood.

Parental psychological distress and cancer stage: a comparison of adults with metastatic and non-metastatic cancer.

PURPOSE: Parents with cancer have unique and often under-recognized psychological distress about the impact of their illness on their children. Relatively little is known about how parenting concerns may differ among patients by cancer stage. METHODS: This is a secondary data analysis of 203 adults with cancer who had children < 18 years old from two geographically distinct areas. We used an analysis of covariance to estimate the mean differences in PCQ, depression symptom severity and anxiety symptom severity (Hospital Anxiety and Depression Scale, HADS) scores between participants with metastatic and non-metastatic disease, and Pearson's correlation coefficients to assess associations between HADS and PCQ scores by cancer stage. RESULTS: Seventy-two percent of participants (n = 146) had metastatic solid tumor cancer. In adjusted analyses, mean PCQ scores did not significantly differ between parents with metastatic and non-metastatic disease (2.0 vs. 2.2, p = 0.06). Differences in mean PCQ scores were driven by a single question concerning the impact of death on children (2.3 vs. 2.9, p = 0.004). Mean HADS scores did not significantly differ between groups, although PCQ scores explained a greater amount of variance in HADS scores for the metastatic group as compared to the non-metastatic group. CONCLUSIONS: With the exception of concerns about death, intensity of parenting concerns, as measured by the PCQ, was similar between parents with metastatic and non-metastatic cancer. However, parenting concerns may be more strongly linked to overall psychological distress in patients with metastatic disease. Further research is needed to clarify how parenting concerns uniquely relate to advanced stage illness.

Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children.

OBJECTIVE: Although cancer patients with minor children have become more of a focus of psycho-oncological research, little is known about specific parenting concerns. Instruments to assess the concerns and worries of parents with cancer are rare. The Parenting Concerns Questionnaire (PCQ) addresses this issue. We analyzed parenting concerns in cancer survivors and evaluated the German version of the PCQ. METHODS: A total of 1416 cancer survivors with minor and young adult children (≤21 years) were recruited in a register-based study. Descriptive analyses as well as reliability and validity analyses were conducted. We performed a confirmatory factorial analysis of the factor structure proposed by the authors of the original version on the PCQ. RESULTS: Seventy-three percent of the cancer survivors were women, average age was 47.5 years (SD 5.9). Mean time since diagnosis was 44 months (SD 23.4). Between 18 and 31% of survivors reported that they were concerned about their children. The PCQ proved to be a reliable and valid instrument showing medium correlations with standardized measures in expected directions and discriminating between survivors with and without use of psychosocial support services. The factor structure was supported by the confirmatory factorial analysis. CONCLUSIONS: Assessing parenting concerns gives an additional insight into the situation of parents with cancer. In our sample of cancer survivors, we identified one out of three survivors being concerned regarding the impact of their illness on their children. The PCQ can be considered as a valid and reliable instrument with regard to identifying concerned parents with cancer. Copyright © 2015 John Wiley & Sons, Ltd.

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.

Anxiety sensitivity in bereaved adults with and without complicated grief.

Complicated grief (CG) is a bereavement-specific syndrome chiefly characterized by symptoms of persistent separation distress. Physiological reactivity to reminders of the loss and repeated acute pangs or waves of severe anxiety and psychological pain are prominent features of CG. Fear of this grief-related physiological arousal may contribute to CG by increasing the distress associated with grief reactions and increasing the likelihood of maladaptive coping strategies and grief-related avoidance. Here, we examined anxiety sensitivity (AS; i.e., the fear of anxiety-related sensations) in two studies of bereaved adults with and without CG. In both studies, bereaved adults with CG exhibited elevated AS relative to those without CG. In study 2, AS was positively associated with CG symptom severity among those with CG. These findings are consistent with the possibility that AS contributes to the development or maintenance of CG symptoms.

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.

When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response.

BACKGROUND: BRCA1/2 testing is not recommended for children, as risk reduction measures and screening are not generally recommended before 25 years old (YO). Little is known about the prevalence and predictors of parent communication to offspring and how offspring respond to this communication. METHODS: Semi-structured interviews were conducted with parents who had BRCA1/2 testing and at least 1 child <25 YO. Logistic regressions were utilized to evaluate associations with communication. Framework analysis was utilized to analyze open-ended responses. RESULTS: A total of 253 parents completed interviews (61% response rate), reporting on 505 offspring. Twenty-nine percent of parents were BRCA1/2 mutation carriers. Three hundred thirty-four (66%) offspring learned of their parent's test result. Older offspring age (P ≤ .01), offspring gender (female, P = .05), parents' negative test result (P = .03), and parents' education (high school only, P = .02) were associated with communication to offspring. The most frequently reported initial offspring responses were neutral (41%) or relief (28%). Thirteen percent of offspring were reported to experience concern or distress (11%) in response to parental communication of their test results. Distress was more frequently perceived among offspring learning of their parent's BRCA1/2 positive or variant of uncertain significance result. CONCLUSIONS: Many parents communicate their BRCA1/2 test results to young offspring. Parents' perceptions of offspring responses appear to vary by offspring age and parent test result. A better understanding of how young offspring respond to information about hereditary risk for adult cancer could provide opportunities to optimize adaptive psychosocial responses to risk information and performance of health behaviors, in adolescence and throughout an at-risk life span.

Knowledge and perceptions of familial and genetic risks for breast cancer risk in adolescent girls.

Evidence suggests early events might modify adult breast cancer risk and many adolescents learn of familial and genetic risks for breast cancer. Little is known about how adolescent girls understand and respond to breast cancer risk. Semi-structured interviews with 11-19 year-old girls at high-risk and population-risk for breast cancer evaluated knowledge and perceptions of breast cancer risk and risk modification. Framework analysis and descriptive statistics were utilized to analyze open-ended responses. Risk group and age differences were evaluated by Fisher's exact and McNemar's tests. Fifty-four girls (86 % of invited), 35 high-risk (65 %), and 19 population-risk (35 %) completed interviews. The most frequently reported risk for breast cancer was family history/hereditary predisposition (66 %). Only 17 % of girls were aware of BRCA1/2 genes. The majority (76 %) of high-risk girls perceive themselves to be at increased risk for breast cancer, compared to 22 % of population-risk girls (p = 0.001). Half of girls reported that women can get breast cancer before 20-years-old. The majority believe there are things women (70 %) and girls (67 %) can do to prevent breast cancer. Mother was the most frequently reported source of information for breast cancer among both high-risk (97 %) and population-risk (89 %) girls. In this study, many high-risk girls perceive themselves to be at increased risk for breast cancer, and many girls believe that breast cancer can occur in teens. Yet, most girls believe there are things women and girls can do to prevent breast cancer. Research evaluating the impact of awareness and perceptions of breast cancer risk on psychosocial, health, and risk behaviors is needed to develop strategies to optimize responses to cancer risk.

Shame, guilt, and pride after loss: Exploring the relationship between moral emotions and psychopathology in bereaved adults.

BACKGROUND: Self-blame following bereavement has been implicated in the development of post-loss psychopathology. However, prior studies have not distinguished between the emotions of shame versus guilt. This study examined the cross-sectional associations among bereavement-related shame, bereavement-related guilt, and two mental disorders that commonly arise after bereavement: complicated grief and depression. In addition, exploratory analyses examined the associations between bereavement-related pride and post-loss psychopathology. METHODS: Participants included 92 bereaved adults who experienced the death of a family member at least one year prior to the study. Participants completed self-report measures of complicated grief symptoms, depression symptoms, shame, guilt, and pride. RESULTS: Shame and guilt were positively correlated with complicated grief and depression symptoms. When controlling for their shared variance, only shame remained a significant predictor of post-loss psychopathology. Follow-up analyses indicated that the effect of guilt on psychopathology depended on the level of shame, and vice versa. At low shame, guilt predicted psychopathology; however guilt did not predict psychopathology at moderate to high shame. At low to moderate guilt, shame predicted psychopathology; however shame did not predict psychopathology at high guilt. Pride negatively predicted depression symptoms, but not complicated grief symptoms, when we controlled for shame and guilt. LIMITATIONS: Limitations include the cross-sectional design and modest sample size. CONCLUSIONS: Our analyses identify shame as the more pathogenic moral emotion for bereaved adults. However, whereas guilt in the absence of shame is often considered adaptive, we found that guilt predicted greater psychological distress at low levels of shame in this sample.

Parenting with a Life-Limiting Illness.

Parents with life-threatening illness face unique challenges in their dual roles as patients and parents. They are at risk for depression, parenting stress, and impaired family functioning, and their children are at risk for adjustment difficulties. In addition to treatment of depression and other mental health issues, patients may also benefit from evidence-informed guidance addressing the challenges of parenting while ill. Consultations should be tailored to each family, with consideration of children's developmental stage and temperament. Clinical recommendations for communication about a parent's anticipated death, helping children spend meaningful time with an ill parent, and legacy leaving are provided.

Complicated grief and its correlates in patients with bipolar disorder.

BACKGROUND: While the recent loss of a loved one has been identified as a risk factor for suicide in patients with bipolar disorder, and complicated grief (CG) has been associated with elevated rates of suicidality compared with loss without CG, little is known about the frequency or impact of CG in bipolar disorder. We investigated the frequency and implications of loss of loved ones in an ongoing study of bipolar disorder. METHOD: We conducted a survey of 120 patients with well-characterized DSM-IV bipolar disorder participating in Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD), a large naturalistic study, in order to identify frequency of loss and to examine the presence of CG and its clinical correlates. Survey data were gathered from October 2003 to March 2004. RESULTS: A lifetime history of a significant loss was reported by 86% (103/120) of participants; 24.3% (25/103) of those met criteria for CG, defined as a score > or = 25 on the Inventory of Complicated Grief (ICG), with a mean +/- SD ICG score of 33.7 +/- 6.9. The presence of CG was associated with elevated rates of panic disorder and alcohol abuse comorbidity, as well as other measures of panic symptoms and phobic avoidance. CG was also associated with a higher rate of lifetime suicide attempts, greater functional impairment, and poorer social support. CONCLUSION: Our findings suggest the presence of a substantial burden of comorbid grief-related illness and impairment in patients with bipolar disorder. Further research is needed to understand the overlap of anxiety disorders and phobic avoidance in bipolar patients with complicated grief.

A secure base in adolescence: markers of attachment security in the mother-adolescent relationship.

This study sought to identify ways in which adolescent attachment security, as assessed via the Adult Attachment Interview, is manifest in qualities of the secure base provided by the mother-adolescent relationship. Assessments included data coded from mother-adolescent interactions, test-based data, and adolescent self-reports obtained from an ethnically and socioeconomically diverse sample of moderately at-risk 9th and 10th graders. This study found several robust markers of adolescent attachment security in the mother-adolescent relationship. Each of these markers was found to contribute unique variance to explaining adolescent security, and in combination, they accounted for as much as 40% of the raw variance in adolescent security. These findings suggest that security is closely connected to the workings of the mother-adolescent relationship via a secure-base phenomenon, in which the teen can explore independence in thought and speech from the secure base of a maternal relationship characterized by maternal attunement to the adolescent and maternal supportiveness.