Cancer Caregivers' Prognostic and End-of-Life Communication Needs and Experiences and their Impact.

CONTEXT: Family caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers' communication experiences or the impact of these experiences on patients and caregivers at EOL. OBJECTIVES: Investigate cancer caregivers' communication experiences and potential impact on patient and caregiver outcomes. METHODS: Semistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes. RESULTS: Caregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating-often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers' and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers' abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement. CONCLUSION: Caregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients' communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.

Psychosocial issues and quality of life of parenting partners of young women with breast cancer.

PURPOSE: Data are lacking about the association between quality of life (QOL) and psychosocial issues of partners of young women with breast cancer who co-parent dependent children. METHODS: We conducted a cross-sectional analysis of partners of women with breast cancer diagnosed at age ≤ 40. Among those partners reporting at least one dependent child under 18 years old at the time of diagnosis, we used multiple linear regression to examine associations between partner QOL and sociodemographic and psychosocial factors, and the patient's cancer stage and time since diagnosis. RESULTS: Of the 219 parenting partners, all identified as male with a median age of 44 years; 96% (204/213) reported working full-time at the time of the survey. Fifty-four percent endorsed behaviors indicating maladaptive coping. In adjusted analyses, less than full-time employment (ß = - 8.76; 95% CI = - 17.37, - 0.14), younger age (ß = - 0.35; 95% CI = - 0.069, - 0.02), greater parenting concerns (ß = 0.56; 95% CI = 0.36, 0.75), clinically relevant anxiety symptoms (ß = 13.79; 95% CI = 10.24, 17.35), lower post-traumatic growth score (ß = - 0.33; 95% CI = - 0.51, - 0.16), lower social support (ß = - 0.21; 95% CI = - 0.29, - 0.12), lower sexual satisfaction (ß = - 0.40; 95% CI = - 0.62, - 0.19), and breast cancer stages 3 (ß = 7.61; 95% CI = 0.19, 15.02) and 4 (ß = 12.63; 95% CI = 1.91, 23.34), when compared to stage 0, were associated with lower partner QOL. CONCLUSION: Parenting partners of young women with breast cancer have substantial unmet psychosocial needs. Interventions are needed to enhance QOL and promote adaptive coping for this population.

Addressing the needs of parents with advanced cancer: Attitudes, practice behaviors, and training experiences of oncology social workers.

OBJECTIVE: Advanced cancer patients who are parents of minor children experience heightened psychosocial distress. Oncology social workers (OSWs) are essential providers of psychosocial support to parents with advanced cancer. Yet, little is known about the experiences and approaches of OSWs in addressing these patients' unique needs. The purpose of this study was to characterize the attitudes, practice behaviors, and training experiences of OSWs who provide psychosocial care for advanced cancer patients with minor children. METHOD: Forty-one OSWs participated in a cross-sectional survey addressing multiple facets of their psychosocial care for parents with advanced cancer. The five assessed domains of psychosocial support were communication support, emotional support, household support, illness and treatment decision-making support, and end-of-life planning. RESULTS: Participants reported greatest confidence in counseling patients on communication with children about illness and providing support to co-parents about parenting concerns. OSWs reported less confidence in counseling parents on end-of-life issues and assisting families with non-traditional household structures. The majority of participants reported needing more time in their clinical practice to sufficiently address parents' psychosocial needs. Nearly 90% of participants were interested in receiving further training on the care of parents with advanced cancer. SIGNIFICANCE OF RESULTS: To improve the care of parents with advanced cancer, it is critical to understand how the psychosocial oncology workforce perceives its clinical practice needs. Study findings suggest an opportunity for enhanced training, particularly with respect to end-of-life needs and in response to the changing household structure of American families.

Burnout in psychosocial oncology clinicians: A systematic review.

OBJECTIVE: Few studies have examined burnout in psychosocial oncology clinicians. The aim of this systematic review was to summarize what is known about the prevalence and severity of burnout in psychosocial clinicians who work in oncology settings and the factors that are believed to contribute or protect against it. METHOD: Articles on burnout (including compassion fatigue and secondary trauma) in psychosocial oncology clinicians were identified by searching PubMed/MEDLINE, EMBASE, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, and the Web of Science Core Collection. RESULTS: Thirty-eight articles were reviewed at the full-text level, and of those, nine met study inclusion criteria. All were published between 2004 and 2018 and included data from 678 psychosocial clinicians. Quality assessment revealed relatively low risk of bias and high methodological quality. Study composition and sample size varied greatly, and the majority of clinicians were aged between 40 and 59 years. Across studies, 10 different measures were used to assess burnout, secondary traumatic stress, and compassion fatigue, in addition to factors that might impact burnout, including work engagement, meaning, and moral distress. When compared with other medical professionals, psychosocial oncology clinicians endorsed lower levels of burnout. SIGNIFICANCE OF RESULTS: This systematic review suggests that psychosocial clinicians are not at increased risk of burnout compared with other health care professionals working in oncology or in mental health. Although the data are quite limited, several factors appear to be associated with less burnout in psychosocial clinicians, including exposure to patient recovery, discussing traumas, less moral distress, and finding meaning in their work. More research using standardized measures of burnout with larger samples of clinicians is needed to examine both prevalence rates and how the experience of burnout changes over time. By virtue of their training, psychosocial clinicians are well placed to support each other and their nursing and medical colleagues.

Partners of young breast cancer survivors: a cross-sectional evaluation of psychosocial concerns, coping, and mental health.

PURPOSE: Evaluation of psychosocial concerns, coping style, and mental health in partners of young (diagnosed at ≤40 years) survivors of early-stage breast cancer (BC). DESIGN: Cross-sectional; partners participated in a one-time survey. SAMPLE: 289 participants; most were male, white, working full-time, college educated, with median age of 43 years, parenting children <18 years old. METHODS: Logistic regression was used to explore associations with anxiety and depression (≥8 on Hospital Anxiety and Depression sub-scales). FINDINGS: Overall, 41% reported symptoms of anxiety, 18% reported symptoms of depression, and 44% identified maladaptive coping. Multivariable regression analyses revealed: lower social support and poorer quality of life significantly associated with depression (p < .05); maladaptive coping, fulltime employment, poorer caregiver QOL, and less education significantly associated with anxiety. CONCLUSIONS: Partners of young BC survivors who use more maladaptive coping strategies, report less social support, work fulltime, and/or who have lower education levels experience negative mental health outcomes. IMPLICATIONS FOR PSYCHOSOCIAL ONCOLOGY: Enhancing constructive coping and ensuring all partners have access to supportive resources may improve partners' emotional adjustment.

Impact of pre-diagnosis depressive symptoms and health-related quality of life on treatment choice for ductal carcinoma in situ and stage I breast cancer in older women.

PURPOSE: To examine whether pre-diagnosis patient-reported health-related quality of life (HRQOL) and depressive symptoms are associated with local treatment for older women with ductal carcinoma in situ (DCIS) and stage I breast cancer (BC). METHODS: Using the SEER-MHOS dataset, we identified women ≥ 65 years old with DCIS or stage I BC diagnosed 1998-2011 who completed surveys ≤ 24 months before diagnosis. Depressive symptoms were measured by major depressive disorder (MDD) risk and HRQOL was measured by Physical and Mental Component Summary scores (PCS and MCS, respectively) of the SF-36/VR-12. Associations with treatment choice (breast-conserving surgery [BCS] and radiation therapy [RT], BCS alone, mastectomy) were assessed with multivariable multinomial logistic regression, controlling for patient characteristics. RESULTS: We identified 425 women with DCIS and 982 with stage I BC. Overall, 20.4% endorsed depressive symptoms placing them at risk for MDD pre-diagnosis; mean MCS and PCS scores were 52.3 (SD = 10.1) and 40.5 (SD = 11.5), respectively. Among women with DCIS, those at risk for MDD were more likely to receive BCS (adjusted odds ratio [AOR] 2.04, 95% CI 1.04-4.00, p = 0.04) or mastectomy (AOR 1.88, 95% CI 0.91-3.86, p = 0.09) compared to BCS + RT. For DCIS, MCS score was not associated with treatment; higher PCS score was associated with decreased likelihood of receiving mastectomy versus BCS + RT (AOR 0.71 per 10-point increase, 95% CI 0.54-0.95, p = 0.02). For BC, none of the measures were significantly associated with treatment. CONCLUSION: Older women at risk for MDD before DCIS diagnosis were less likely to receive RT after BCS, compared to BCS alone or mastectomy.

Partner support and anxiety in young women with breast cancer.

OBJECTIVE: Using a large prospective cohort of women age 40 or younger diagnosed with breast cancer, we examined the relationship between perceived partner support and anxiety. METHODS: Six hundred seventy-five young women with breast cancer Stages I-III, median age 36, completed a self-report baseline questionnaire. Perceived partner support was assessed using items extracted from the marital subscale of the Cancer Rehabilitation Evaluation System; generalized social support was assessed with the Medical Outcomes Study-Social Support Survey. Anxiety was measured using the anxiety subscale of the Hospital Anxiety and Depression Scale. Multivariable logistic regression analyses evaluated the association between partner support, other sociodemographic factors, and anxiety. RESULTS: Mean age at diagnosis was 35.4 years. Fourteen percent of the women were not partnered, and among those who were partnered or in a significant relationship, 20% were categorized as unsupported. In univariate and multivariable analysis adjusting for sociodemographic factors, women in an unsupported-partnered relationship had higher odds of anxiety symptoms compared with women in a supported-partnered relationship. Young age and being financially insecure were also both independently associated with anxiety. CONCLUSIONS: Our findings suggest that partner support may play a key role in a young woman's adjustment to a serious stressor such as breast cancer. In addition, younger age increases vulnerability to anxiety as does struggling with finances. Because supportive efforts of a partner have potential to protect against the impact of stress, interventions to enhance partner support and reduce anxiety might be beneficial to address challenges experienced as a couple in this setting.