Sophie Lebel

Stigma in cancer patients whose behavior may have contributed to their disease

The purpose of the present review is to examine stigma and its consequences among people with cancer, with an emphasis on the situation in which ones behavior may have contributed to the disease. We examine whether voluntarily engaging in behavior that adds to cancer risk leads to increased stigma after cancer onset, as compared with when ones behavior is not considered (by the affected individual or by others) to have contributed to the onset of cancer. We conducted literature searches in PsychInfo and Medline and identified 38 published papers that empirically addressed cancer-related stigma. We found evidence of increased negative attitudes and more severe consequences of stigma among people that have engaged in a behavior that is perceived to have contributed to their cancer, compared with those who are not perceived to have contributed to their disease.

The psychosocial impact of stigma in people with head and neck or lung cancer.

Lung and head and neck cancers are widely believed to produce psychologically destructive stigma because they are linked to avoidable risk‐producing behaviors and are highly visible, but little research has tested these ideas. We examined cancer‐related stigma, its determinants, and its psychosocial impact in lung (n = 107) and head and neck cancer survivors (n = 99) ≤3 years post‐diagnosis. We investigated cancer site, self‐blame, disfigurement, and sex as determinants, benefit finding as a moderator, and illness intrusiveness as a mediator of the relation between stigma and its psychosocial impact.

Young and worried: Age and fear of recurrence in breast cancer survivors.

OBJECTIVE Fear of cancer recurrence (FCR) is a frequently cited and unmet need of cancer survivors. While the relation between age and FCR is well documented, the mechanisms that may explain this phenomenon remain to be investigated. This study examined four possible mechanisms of the relation between age and FCR: motherhood, severity of the cancer (defined as cancer stage and chemotherapy), anxiety, and illness intrusiveness. METHODS 3,239 women with breast cancer (mean time since diagnosis: 6.6 years) completed the Concerns About Recurrence Scale (CARS), the State Trait Anxiety Inventory (STAI), and the Illness Intrusiveness Ratings Scale (IIRS) within a larger web-based study. Women were divided into four groups based on their current age: < 34, 35-49, 50-64, and >65. Multivariate analyses were performed with age category and motherhood as the independent variables and the CARS subscales as the dependent variables, controlling for age of children and relevant covariates. Severity of the cancer, anxiety, and illness intrusiveness were simultaneously tested as mediators of the relation between age and FCR. RESULTS Results indicated that age category was related to FCR, F = 10.37, p < .001. Follow-up tests revealed that women under 34 or 35-49 expressed the highest levels of FCR. Mothers, regardless of their ages or the ages of their children, expressed greater FCR. Illness intrusiveness and to a lesser extent anxiety were mediators of the relation between age and FCR, while severity of the cancer was not. CONCLUSIONS Younger age was associated with more FCR among breast cancer patients, regardless of motherhood status. Our findings suggest new, potentially valuable ways of managing FCR by helping affected people to reduce anxiety and illness intrusiveness.

The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review

Objective: Hematopoietic stem cell transplant (HSCT) is a demanding procedure with associated physical and psychological sequelae that affects patients and their families. Caregivers to HSCT patients not only have to cope with the life‐threatening nature of the disease and treatment, but they also have care‐giving responsibilities. This study reviews the literature on the psychosocial impact of being a caregiver to a HSCT patient.

Addressing fear of cancer recurrence among women with cancer: a feasibility and preliminary outcome study.

BackgroundEvidence suggests that fear of cancer recurrence (FCR) is one of the most frequently cited unmet needs among cancer survivors and is associated with psychological distress, stress-response symptoms, and lower quality of life, as well as increased use of health care resources. Despite these factors, few manualized interventions exist to address FCR among cancer survivors.PurposeTo develop, manualize, and pilot test the feasibility and preliminary efficacy of a 6-week cognitive-existential (CE) group intervention designed to address FCR in women with breast or ovarian cancer.MethodsThis study was a single-arm multi-site study with pre-, post-, and 3-month follow-up measurement occasions.ResultsA total of 56 breast or ovarian cancer survivors enrolled in the study; 44 completed the CE group intervention. Following the intervention, women experienced a reduction in the primary study outcome measure of FCR and secondary study outcome measures of cancer-specific distress and uncertainty. They also reported improvements in secondary study outcome measures of quality of life and coping. The effect sizes of the observed changes were for the most part in the medium to large effect range; furthermore, almost all changes were sustained at 3-month follow-up.ConclusionThis brief intervention appears feasible and has shown promising results in addressing FCR and related secondary outcomes of cancer-specific distress, uncertainty, quality of life, and coping; however, it should be further tested using a randomized controlled study design to more definitively assess its efficacy.Implications for Cancer SurvivorsFCR is a near-universal worry for cancer survivors that, when left unaddressed, tends to remain stable over time. This study has important implications for all cancer survivors as it is the first published intervention that provides preliminary evidence of its efficacy in decreasing fear of cancer recurrence.

Predicting stress-related problems in long-term breast cancer survivors

INTRODUCTION Little is known about the early clinical and psychosocial factors associated with subsequent stress-related problems in breast cancer survivors. METHODS We used data collected at 3, 7, 11, and 15 months post-diagnosis to predict stress-related problems in 86 breast cancer survivors at 6 years post-diagnosis. We examined two common stress-related problems: (a) emotional distress and (b) intrusion and avoidance. Hypothesized risk factors included perceived stressfulness of the cancer; fear of the future; poor perceived health; initial stress-related problems; avoidance coping; and second cancer experience. Hypothesized protective factors included active coping (seeking social support; positive problem solving); optimism; and social support. RESULTS Hierarchical multiple regression analyses, controlling for age and education, indicated that positive problem-solving coping at 3 months and emotional distress at 7 months significantly predicted 6-year emotional distress (R(2)=.24, P<.01). Second cancer experience and 3-month intrusion and avoidance significantly predicted 6-year intrusion and avoidance (R(2)=.38, P<.001). In both cases, risk and/or protective factors measured at 11 and 15 months did not add significantly to the regression equations. DISCUSSION/CONCLUSION Symptoms of intrusion and avoidance should be monitored carefully during the first 3 months following diagnosis because they signal the risk that these symptoms will persist in the long-term. Elevated emotional distress at 7-months post-diagnosis and second-cancer experiences may signal the need for psychosocial intervention. Overreliance on positive problem solving to cope early in the disease trajectory may be detrimental in the longer term.

Sexual health and gynecological cancer: conceptualizing patient needs and overcoming barriers to seeking and accessing services

Objective: The current study explored the subjective experiences of women treated for a gynecological cancer, with a focus on filling gaps in the current literature. Topics explored were: (1) women’s own definitions of healthy sexuality; (2) services desired to meet needs; and (3) barriers to participation in sexual health-related services. Methods: Fifteen women participated in a one-on-one, semistructured interview. Data collection and analysis were based on guidelines of interpretive description. Results: Definitions of healthy sexuality included emotional intimacy, body image, sexual self-schema, and sexual response. Unmet sexual needs were reported when women’s current sexual experiences did not correspond with their subjective perceptions of healthy sexuality. Most women desired informational services, delivered one-on-one or through written material. Younger women often did not utilize services due to practical barriers and emotional avoidance, while older women reported that shyness and stigma discouraged them from discussing sexuality with their health care team. Conclusions: In order to understand patient needs and desire for help, health care providers should assess current sexual health and patient perceptions of healthy sexuality. To increase effectiveness of distress screening and treatment interventions, potential barriers must be evaluated and addressed.

The burden of stress in head and neck cancer.

Head and neck cancer (HNCa) introduces numerous stressors. We developed the Cancer‐Related Stressors Checklist (CRSC), which documents exposure to seven categories of common stressors and emotional distress. We surveyed HNCa survivors and examined associations among exposure to cancer‐related stressors, illness intrusiveness (i.e., cancer‐induced interference with lifestyles, activities, and interests), and distress. We also investigated whether reported exposure rates differ between self‐administered and interviewer‐administered measures.

The influence of social support on hematopoietic stem cell transplantation survival: a systematic review of literature.

Background Hematopoietic Stem cell Transplantation (HSCT) can negatively impact the psychosocial well-being of the patient. Social support is a complex term that has been variably used to encompass perceived and objective support, including caregiver presence. Social support has been associated with superior psychosocial outcomes; however the influence of social support on HSCT survival remains unclear. We sought to summarize the literature on the influence of social support on HSCT survival. Methods Medline, EMBASE, Cochrane, CINAHL, and PsycINFO were searched using the following search categories/concepts: 1) HSCT, 2) Social support, 3) Caregiver, 4) Survival, and 5) Treatment outcomes. Results We identified 6 relevant studies: 4 publications, 1 dissertation, and 1 abstract. Three studies were retrospective and 3, prospective. Sample size ranged between 92–272 with a mean/median patient age between 30–55 yrs. The duration of follow-up ranged between 13.3–48 months. Social support was measured inconsistently: 2 by retrospective investigator assessment, 2 as patients’ perceived support, 1 as caregiver presence, and 1 included caregiver presence and retrospective investigator assessment. The 4 published studies and 1 abstract demonstrate an association between better social support and survival. However, the unpublished dissertation, with the largest sample size found no association. Conclusions There is a paucity of evidence examining social support with HSCT survival. Available studies are older, with the most recent publication in 2005. A heterogeneous group of HSCT patients were studied with variable follow-up times. Further, covariates were variably considered in HSCT survival analyses and we suggest that there may be publication bias, given the negative unpublished study with the largest sample size. Prospective studies using validated scales are necessary to better assess the influence of social support on HSCT mortality. Given the potential for improved HSCT survival with better social support, HSCT centres should routinely provide HSCT recipients and their caregivers with enhanced psychosocial services.

Current state and future prospects of research on fear of cancer recurrence

Despite a rapidly growing research interest in fear of cancer recurrence, lack of consensus on definition and measurement including clinical fear of cancer recurrence, sparse model development and testing, and limited available clinical interventions have impeded knowledge transfer into patient services. To move forward, a 2‐day colloquium was held in Ottawa, Canada in August 2015 to progress knowledge and identify future research directions. A comprehensive research program was proposed, including development of a clinical definition, an updated review of screening measures, and a review of existing interventions. A new special interest group was created with the International Psychosocial Oncology Society to facilitate the implementation of this research program and future international collaborations. Copyright