Families Addressing Cancer Together (FACT): feasibility and acceptability of a web-based psychosocial intervention for parents with cancer.

PURPOSE: Although parents with cancer report that talking with their children about cancer and dying is distressing, accessible support is rare. We assessed the feasibility, acceptability, and preliminary effects of Families Addressing Cancer Together (FACT), a web-based, tailored psychosocial intervention to help parents talk about their cancer with their children. METHODS: This pilot study used a pre-posttest design. Eligible participants were parents with new or metastatic solid tumors who had minor (ages 3-18) children. Participants who completed baseline assessments received online access to FACT. We assessed feasibility through enrollment and retention rates and reasons for study refusal. Acceptability was evaluated by satisfaction ratings. We examined participants' selection of intervention content and preliminary effects on communication self-efficacy and other psychosocial outcomes (depression and anxiety symptoms, health-related quality of life, family functioning) at 2- and 12-week post-intervention. RESULTS: Of 68 parents we approached, 53 (78%) agreed to participate. Forty-six parents completed baseline assessments and received the FACT intervention. Of the 46 participants, 35 (76%) completed 2-week assessments, and 25 (54%) completed 12-week assessments. Parents reported that FACT was helpful (90%), relevant (95%), and easy to understand (100%). Parents' psychosocial outcomes did not significantly improve post-intervention, but parents endorsed less worry about talking with their child (46% vs. 37%) and reductions in the number of communication concerns (3.4 to 1.8). CONCLUSION: The FACT intervention was feasible, acceptable, and has potential to address communication concerns of parents with cancer. A randomized trial is needed to test its efficacy in improving psychological and parenting outcomes. TRIAL REGISTRATION: This study was IRB-approved and registered with clinicaltrials.gov (NCT04342871).

Parenting through grief: A cross-sectional study of recently bereaved adults with minor children.

BACKGROUND: Grieving adults raising parentally-bereaved minor children experience persistently elevated symptoms of depression and grief. However, the factors associated with their mental health outcomes are not well understood. AIM: To investigate the psychosocial and demographic characteristics associated with grief distress and depressive symptom severity in bereaved adults with minor children. DESIGN: Cross-sectional, web-based survey. SETTING/PARTICIPANTS: Eight hundred forty-five bereaved adults raising minor (age <18 years) children who had experienced the death of a co-parent. Primary outcomes were grief distress (Prolonged Grief Disorder-13), depressive symptoms (Patient-Reported Outcomes Measurement Information System-Depression), and widowed parenting self-efficacy (WPSES). RESULTS: Mean grief scores were 33.5; mean depression scores were 58.3. Among the 690 individuals more than 6 months bereaved, 132 (19.3%) met criteria for prolonged grief disorder. In adjusted models, participants reporting higher grief scores were more recently bereaved, identified as mothers, non-Caucasian, had lower education and income, and had not anticipated their co-parent's death. The statistical modeling results for depression scores were similar to grief scores except that depression was not associated with anticipation of co-parent death. Parents reporting lower WPSES scores had higher grief and depression scores. Retrospective assessments of more intense parenting worries at the time of co-parent death were also associated with higher grief and depression scores. CONCLUSIONS: For bereaved adults with minor children, unanticipated co-parent death was linked with higher grief distress but not symptoms of depression. Addressing parenting concerns may represent a common pathway for improving the mental health of parentally-bereaved families.

Understanding health-related quality of life in adult women with metastatic cancer who have dependent children.

BACKGROUND: Cancer is a leading cause of death among women of parenting age in the United States. Women living with advanced or incurable cancer who have dependent children experience high rates of depression and anxiety as well as unique parenting challenges. To the authors' knowledge, few studies to date have examined the parenting factors associated with health-related quality of life (HRQOL) in women with advanced cancer. METHODS: The authors conducted a cross-sectional, Web-based survey of the psychosocial concerns of 224 women with a tumor-node-metastasis staging system of the AJCC stage IV solid tumor malignancy who had at least 1 child aged <18 years. Participants completed validated measures of HRQOL (Functional Assessment of Cancer Therapy-General [FACT-G]); depression and anxiety symptom severity; functional status; parenting concerns; and investigator-designed questions to assess demographic, communication, and parenting characteristics. Multiple linear regression models were estimated to identify factors associated with FACT-G total and subscale scores. RESULTS: The mean FACT-G score was 66 (standard deviation, 16). The mean Emotional Well-Being subscale scores were particularly low (13; standard deviation, 5). In multivariable linear regression models, parenting variables explained nearly 40% of the HRQOL model variance. In the fully adjusted model, parenting concerns and the absence of parental prognostic communication with children both were found to be significantly associated with HRQOL scores. For each 1-point increase in parenting concern severity, FACT-G scores decreased by 4 points (P = .003). CONCLUSIONS: Women with metastatic cancer who are parents of dependent children are at risk of high psychological distress and low HRQOL. Parenting factors may have a negative influence on HRQOL in this patient population. Cancer 2018;124:2629-36. © 2018 American Cancer Society.

Communication with children about a parent's advanced cancer and measures of parental anxiety and depression: a cross-sectional mixed-methods study.

PURPOSE: Parents with advanced cancer are faced with difficult decision-making about communication about their illness with their children. The objectives of this study were to describe how parents communicated with their children about advanced cancer and to explore associations between communication and parental depression and anxiety. METHODS: This was a cross-sectional, mixed-methods study of 42 patients with stage IV solid tumor malignancies who had at least one child less than 18 years of age. Participants completed a semi-structured interview and the Hospital Anxiety and Depression Scale (HADS). We used multiple linear regression to evaluate the association between extent of communication and HADS Anxiety and Depression scores. Interview data were analyzed using standard qualitative content and thematic techniques and triangulated with survey data. RESULTS: Higher HADS Anxiety scores, but not HADS Depression scores, were cross-sectionally associated with greater extent of parental communication (p = 0.003), even when controlling for performance status and children's ages. In qualitative analyses, parents who acknowledged the terminal nature of their illness or experienced higher symptom burden were more likely to report that they also communicated more extensively with children. A third of parents (n = 14, 33%) described difficulty with illness-related communication with their children. CONCLUSIONS: In this pilot study, parents with advanced cancer who reported more illness-related communication with their children also reported more symptoms of general anxiety. Future interventions should address psychological distress relevant to parenting and further assess how parental communication may be linked to parental mood symptoms.

Widowed parenting self-efficacy scale: A new measure.

The authors developed and tested a novel measure of parenting self-efficacy specifically for recently widowed parents of dependent-age children. They tested the scale among 244 recently widowed fathers via an open-access web survey. Exploratory factor analysis identified 3 factors: perception of meeting parenting expectations (α = .88), provision of effective discipline (α = .69), and sense of parental burden (α = .69). Scores on the new scale correlated positively with Kansas Parenting Satisfaction and Psychological Adaptation Scale scores, and negatively with CES-D (depression) and TRIG (grief) scale scores. The resulting 9-item Widowed Parenting Self Efficacy Scale is a promising measure for use in research and clinical settings.

Concerns underlying treatment preferences of advanced cancer patients with children.

BACKGROUND: Decision-making about advanced cancer treatment is complex and may be influenced by patients' family context, including the presence of children. We explored how parental values and concerns motivate patients' preferences about aggressiveness of advanced cancer treatment as well as preferences for palliative care and hospice services. METHODS: We conducted semi-structured interviews with 42 patients with advanced cancer who had at least one child under 18 years. We created and applied thematic codes. Descriptive analyses were used to report the number of participants who mentioned each code. RESULTS: The majority of participants (29/42) reported that having children influenced their preferences for advanced cancer care. For most parents, extending life to maximize the time they had left to parent their children was important in guiding treatment preferences. Others prioritized preserving their physical condition and parental functioning and remaining physically close to their children. Many parents discussed life extension and parental functioning preservation as competing priorities. Most of the sample expressed interest in palliative care services and hospice, but responses by several participants reflected concerns about dying at home and lack of clarity about the role of early palliative care. CONCLUSIONS: Parents in our sample expressed that maximizing time with their children and preserving parental functioning were important concerns underlying their preferences for advanced cancer care. Future research should assess the palliative and end-of-life care needs and preferences of parents with advanced cancer, which may differ from those of non-parents. Copyright © 2016 John Wiley & Sons, Ltd.

Parenting while living with advanced cancer: A qualitative study.

BACKGROUND: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. AIM: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. DESIGN: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. SETTING AND PARTICIPANTS: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0-1) and 17 with low functional status (ECOG=2-4). RESULTS: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) "missing out" and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. CONCLUSION: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.

Parenting concerns, quality of life, and psychological distress in patients with advanced cancer.

OBJECTIVE: Parents with life-limiting illness anticipate the loss of their parental role and the long-term consequences of their illness on their children. The purpose of this study was to examine relationships between parenting concerns, quality of life (QOL), and symptoms of depression and anxiety in parents with advanced cancer who have dependent children. METHODS: Sixty-three parents diagnosed with a Stage IV solid malignancy completed the Hospital Anxiety Depression Scale (HADS), Parenting Concerns Questionnaire (PCQ), and Functional Assessment of Cancer Therapy-General (FACT-G). The Medical Outcomes Study Social Support Survey (social support) and Eastern Cooperative Oncology Group (ECOG) performance status were assessed as potential covariates. We performed descriptive statistics and multivariable linear regression models for depression, anxiety, and QOL measures. RESULTS: Mean PCQ score was 2.3 (SD 0.9), reflecting mild to moderate parenting concerns. Average depression and anxiety scores were 6.0 (SD 4.2) and 8.2 (SD 3.9), respectively. PCQ scores were associated with depressive symptoms (r = 0.46, p < 0.001), anxiety symptoms (r = 0.52, p < 0.0001), and QOL scores (r = -0.60, p < 0.001). The relationship of PCQ scores to anxiety symptoms (B = 1.5 p = 0.016) and QOL (B = -5.7, p = 0.02) remained significant after controlling for ECOG status, social support, and treatment status. CONCLUSIONS: Parenting concerns are associated with anxiety and depressive symptoms and worse QOL in parents diagnosed with advanced cancer. Further studies that evaluate how parental status affects coping and psychological distress in advanced cancer are needed.Copyright © 2015 John Wiley & Sons, Ltd.

An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer.

OBJECTIVE: Effective physician communication about prognosis is a critical aspect of quality care for families affected by terminal illness. This is particularly important for spousal caregivers of terminally ill parents of dependent children, who may have unique needs for communication about anticipated death. The objective of this study was to explore end-of-life prognostic communication experiences reported by bereaved fathers whose wives died from cancer. METHODS: From October 2012 to November 2013 we surveyed widowed fathers whose wives died from cancer through an open-access educational website. The survey included the following open-ended questions regarding prognostic communication: 'What is the most important thing you would like us to know about whether/how your wife's doctors communicated with you about her anticipated death? What do you wish had been different, if anything?' We performed traditional content analysis of responses. Two researchers coded and categorized the data. RESULTS: Two hundred forty-four men responded to the survey questions on prognostic communication. Major themes addressed by respondents were the importance of clear and honest communication and physician bedside manner. They also identified unmet information needs, including wanting to know prognosis sooner. Relevant sub-themes included death coming as a surprise, avoidance, and caregiver regret. CONCLUSIONS: Surviving spouses due to cancer can provide important insights for health care providers about optimum prognostic communication at the end of life. Increased physician attention to the communication preferences of both patients and their partners may improve bereavement outcomes for family members.

Overlooked and underserved: Widowed fathers with dependent-age children.

OBJECTIVE: Widowed fathers and their children are at heightened risk for poor coping and maladaptive psychosocial outcomes. This exploratory study is the first to explicitly examine the psychological characteristics of this population of fathers. METHOD: Some 259 fathers (mean age = 46.81; 90% Caucasian) with dependent-age children and whose wives had died from cancer within the previous five years completed a web-based survey that consisted of demographic questions, the Center for Epidemiologic Studies Depression Scale (CES-D), the Texas Inventory of Grief-Revised (TRIG-R), the Psychological Adaptation Scale (PAS), the Kansas Parental Satisfaction Scale (KPSS), and items assessing perceived parental efficacy. RESULTS: Fathers were found to have elevated depressive (CES-D mean = 22.6) and grief (TRIG-R mean = 70.3) symptomatology, low adaptation (PAS mean = 3.2), and high levels of stress related to their parenting role. They reported being satisfied with their parenting (KPSS mean = 15.8) and having met their own parental expectations. Multivariate analyses revealed an association between father's age and depression (p = <0.01), with younger fathers reporting greater depressive symptoms. Psychological adaptation was positively correlated with being in a romantic relationship (p = 0.02) and age of oldest child (p = 0.02). SIGNIFICANCE OF RESULTS: The results of our exploratory study suggest that, while widowed fathers perceive themselves as meeting their parental responsibilities, it comes at a substantial psychological cost, with particularly high stress related to being a sole parent. These findings may help guide interventions for this neglected population and underscore the importance of developing targeted therapies and research protocols to address their needs.

Single fatherhood due to cancer.

Cancer is a leading cause of widowed fatherhood in the USA. Fathers whose spouses have died from cancer constitute a potentially vulnerable population as they adjust to their role as sole or primary caregiver while managing their own grief and that of their children. The importance of addressing the psychological needs of widowed fathers is underscored by data showing that father's coping and emotional availability are closely tied to their bereaved children's mental health. Surprisingly, scant attention has been given to the phenomenon of widowed fatherhood with virtually no clinical resources or research studies devoted to fathers who have lost their wives to cancer. This commentary highlights key challenges facing this underserved population of widowers and calls for development of research agendas and clinical interventions for single fathers due to cancer.

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.

Psychological and parental functioning of widowed fathers: The first two years.

Widowed parents play a critical role in promoting family adaptation and facilitating their children's adjustment to the loss of a parent; yet the psychological wellbeing of these parents has received scant attention. In this study we examined depressive symptoms and grief intensity in 252 spousally bereaved men with dependent-age children. Participants learned of the study and completed initial surveys at variable time points during their first 2 years of bereavement. Depressive and grief symptoms remained persistently high, with 45% of the sample exceeding screening thresholds for clinically significant depressive symptoms two years after the death of their spouses. In linear regression models, higher intensity or frequency of depression and grief symptoms were associated with poorer psychological adaptation, lower parenting self-efficacy, and lower parenting satisfaction scores. Relationships between fathers' distress and potentially modifiable end-of-life variables regarding their spouses were examined. Notably, those who reported that their wives were at peace with dying had lower depressive and grief scores at various intervals. Overall, the magnitude and duration of the depressive and grief symptoms suggests that widowed fathers' psychological distress does not quickly abate over the first 2 years of bereavement, which may be attributable to the unique set of bereavement challenges facing widowed parents such as facilitating their children's grief, assuming sole parenting responsibilities, and managing a household on their own. The findings underscore the need to further examine emotional distress in widowed parents and how their wellbeing impacts family functioning. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Psychometric Analysis of the Parenting Concerns Questionnaire in Women With Metastatic Cancer.

CONTEXT: Parenting concerns are a major source of distress for patients with advanced cancer. However, validated tools to measure this construct in advanced cancer patients are lacking. OBJECTIVES: The Parenting Concerns Questionnaire (PCQ) is the only tool available to assess parenting concerns in cancer patients, yet its psychometric properties have not been fully evaluated. METHODS: This cross-sectional Web-based survey of the psychosocial concerns included 211 women with Stage IV solid tumor malignancy who had at least one minor child in the home. Participants completed a battery of questionnaires assessing parenting concerns, health-related quality of life (HRQOL), depression and anxiety symptoms, and sociodemographic and clinical characteristics. Internal consistency was assessed by computing Cronbach's alpha. Convergent validity was evaluated using correlations of the PCQ with anxiety and depression symptom severity and HRQOL. We examined the PCQ's underlying dimensions with confirmatory factor analysis. RESULTS: The mean total PCQ score for the sample was 2.2 (SD, 0.7), corresponding to "a little bit concerned." Internal consistency was 0.82. The PCQ demonstrated adequate convergent validity with expected correlations with anxiety (r = 0.49) and depression (r = 0.56) symptom severity, and HRQOL (r = -0.61). The original three-factor structure was not fully supported by confirmatory factor analysis. CONCLUSION: The PCQ assesses a unique aspect of psychological distress in cancer patients. It demonstrated adequate reliability and convergent validity, but its original three-factor structure was not supported in a population of patients with metastatic cancer. The PCQ would benefit from further testing and refinement to enhance its representation of parenting concerns in metastatic cancer.

End-of-life parental communication priorities among bereaved fathers due to cancer.

OBJECTIVES: To elicit widowed fathers' perspectives on which domains of parenting-related communication they consider most important for dying parents to discuss at the end of life (EOL). METHODS: Two hundred seventy nine fathers widowed by cancer completed a survey about their own depression and bereavement symptoms, their wife's illness, and EOL parental communication priorities. Chi square and Fisher's exact tests and logistic regression were used to evaluate relationships between maternal EOL characteristics and fathers' responses to parenting-related EOL communication priorities. RESULTS: Fathers identified raising children in a manner that reflected maternal wishes, whether/how to talk with children about their mother's death, and how the mother wanted to be remembered as the most important EOL communication domains. Fathers who reported that their dying wives were worried about the children were more likely to prioritize raising children in ways that reflect her wishes (p=0.01). Other EOL characteristics were not associated with communication domains. CONCLUSIONS: Communicating with children and maintaining emotional connection with the deceased parent are important priorities for bereaved fathers who lost a spouse to cancer. PRACTICE IMPLICATIONS: Health care providers working with seriously ill parents may improve family outcomes by supporting communication at the EOL between co-parents.

End-of-life experiences of mothers with advanced cancer: perspectives of widowed fathers.

OBJECTIVE: Despite the importance of parenting-related responsibilities for adult patients with terminal illnesses who have dependent children, little is known about the psychological concerns of dying parents and their families at the end of life (EOL). The aim of this study was to elicit widowed fathers' perspectives on how parental status may have influenced the EOL experiences of mothers with advanced cancer. SUBJECTS: 344 men identified themselves through an open-access educational website as widowed fathers who had lost a spouse to cancer and were raising dependent children. METHODS: Participants completed a web-based survey about their wife's EOL experience and cancer history, and their own depression (Center for Epidemiologic Studies Depression Scale, CES-D) and bereavement (Texas Revised Inventory of Grief, TRIG) symptoms. Descriptive statistics, Fisher's exact tests, and linear regression modelling were used to evaluate relationships between variables. RESULTS: According to fathers, 38% of mothers had not said goodbye to their children before death and 26% were not at all 'at peace with dying.' Ninety per cent of widowed fathers reported that their spouse was worried about the strain on their children at the EOL. Fathers who reported clearer prognostic communication between wife and physician had lower CES-D and TRIG scores. CONCLUSIONS: To improve EOL care for seriously ill patients and their families, we must understand the concerns of parents with dependent children. These data underscore the importance of parenting-related worries in this population and the need for additional clinical and research programmes devoted to addressing these issues.

Brief report: post-traumatic stress during emerging adulthood in survivors of pediatric cancer.

OBJECTIVE: To examine post-traumatic stress symptoms (PTSS) and disorder (PTSD) among survivors of childhood cancer and comparison peers during the transition to emerging adulthood. METHOD: From elementary and middle school, we prospectively followed a cohort of 56 cancer survivors, 60 comparison peers, and their parents. Assessments were completed after the youth's 18th birthday using questionnaires and a semi-structured psychiatric interview. Healthcare providers rated treatment severity and late effects. RESULTS: Survivors and comparison peers did not differ on rates of PTSS or PTSD, but comparison peers reported more dissociative experiences than survivors. Late effects were associated with a greater number of past PTSS. Of the 16 cancer survivors who reported a traumatic event, five (31%) were cancer-related. CONCLUSIONS: Levels of PTSS were similar for survivors and comparison peers. Research with other potentially traumatic diseases or treatments (e.g., amputations, brain tumors) is needed. The role of methodology and contextual factors in the assessment of PTSS/PTSD is discussed.