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Objective To explore how individuals with a laryngectomy (IWL) from diverse backgrounds make meaning and adjust to the physical and functional changes from a total laryngectomy. To examine the extent primary supporters (PS) and health professionals (HP) are able to support IWL with the psychosocial and existential challenges rendered by a surgery that significantly impacts a person's talking, breathing, swallowing, and appearance. Methods A constructivist grounded theory approach and symbolic interactionism were used to guide data collection and analysis. Semi-structured interviewing occurred. Results Twenty-eight participants (12 IWL, 9 PS, and 7 HP) were interviewed. The findings suggest that IWL experience significant change to their self-identity and there is evidence of a range of passive and active reframing patterns (destabilised, resigned, resolute, and transformed). The loss of self-expression included changes to communicative participation, personal style, food preferences, and social roles. Short and longer-term supports appear to influence outcomes but are often ill-equipped to manage the psychosocial needs of IWL. Conclusions Loss of self-expression after total laryngectomy influences self-identity and adjustment. How individuals reframe their identity appears to be tied with how they view their disabilities and disfigurement. These perceptions also appear to be influenced by the reactions of others and the support available. Further resourcing, education, and training are needed so that PS and HP can provide holistic care.

Objectives To summarize qualitative studies exploring the impact of losing the breast in women breast cancer survivors. Methods We identify, appraise and synthesise 12 qualitative studies from 2000 to 2015. Quality appraisal of the studies was examined using the Critical Appraisal Skill Programme Checklist and Sandelowski and Barroso's step to synthesise the findings. Results The age of women in these studies ranged from 30–77 years. Losing the breast was regarded as disfigurement resulting in a discrepancy between self and societal image of a woman. Two themes were identified: (1) Changes in identity and (2) Coping with the changes in identity. The findings showed that women breast cancer survivors experienced both negative and positive impact of losing the breast, however, women were able to cope the changes in identity and live with the discrepancy. Conclusions The perceptions of losing the breast were filled with contradictions, tensions and uncertainties while negotiating the discrepancy between the “self and body” and the societal expectations of femininity and womanhood. There is a need to develop personalised care plan for women who are going for mastectomy who may have high risk of developing negative perceptions of losing the breast and continue to support those women who have more positive perceptions of losing the breast.

Objective The purpose of this study was to evaluate the effects of a skin camouflage program on disfigurement, self-esteem, social interaction, and body image in female head and neck cancer (HNC) survivors. Methods A prospective, repeated-measures, randomized controlled therapeutic intervention design was used. A total of 66 participants were randomly assigned to each group, with 32 in the experimental group and 34 in the control group. The experimental group received a 4-session skin camouflage program, and the control group received routine care. Patients were assessed at 3 time points: baseline assessment (T0) and then at 1, 2, and 3 months (T1, T2, and T3, respectively) after participating in the skin camouflage program. Results Patients in the experimental group had significantly less facial disfigurement, depression, fear of social interaction, and anxiety regarding social interaction compared with those in the control group. Participants in both groups had significantly lower levels of facial disfigurement, depression, fear of social interaction, anxiety of social interaction, and body image at the final posttest assessment than at the pretest assessment. There were no differences between the groups and within groups with respect to self-esteem. Conclusions The 3-month skin camouflage program effectively improved facial disfigurement, fear of social interaction, anxiety of social interaction, and body image of female HNC survivors. A survival care plan should include a skin camouflage program to improve body image perception and decrease anxiety after treatment of HNC.

Given that over 24% of women in the United States have a disability and approximately 6% of Americans use mobility aids [1], a significant number of breast cancer survivors will likely have mobility impairments [2]. Physical disability can affect body image, and women with physical disabilities hold more negative body image perceptions than other women [3]. Body image concerns are also common among breast cancer survivors [4]. Breast cancer treatment can result in decreases in body satisfaction, potential breast disfigurement, and bodily changes [5]. Research has not examined body image among women with preceding disability and breast cancer; we thus sought to explore body image perceptions among women with chronic, pre-existing physical disability who developed early-stage breast cancer.

Body image is a multidimensional construct involving perceptions, thoughts, and feelings about the entire body and its functioning.1 It is recognized as a critical psychosocial issue for cancer patients undergoing reconstructive surgery because they are at high risk of experiencing disfigurement and functional impairment. The process of adjusting to bodily changes during reconstructive treatment is ongoing, as multi-staged procedures are often required. Interim outcomes may be particularly bothersome to patients when cosmetic form and function have not been fully restored. Among the adverse psychosocial difficulties linked with body image disturbance in cancer patients include depression and anxiety2–6, sexual functioning difficulties7–10, and impairments in overall quality of life11–13. High rates of body image concerns have been documented for head and neck and breast cancer patients, two groups who most often undergo reconstructive surgery. Body image disturbance is among the most common psychosocial concern reported by women with breast cancer.14 Moreover, up to 75% of patients with head and neck cancer have been found to endorse concerns or embarrassment about bodily changes following diagnosis.15,16 It is difficult to estimate rates of body image concerns among cancer patients undergoing reconstructive surgery as most research on body image and cancer has either been conducted with disease-specific samples or with a particular subgroup receiving reconstruction (i.e., breast reconstruction). The vast literature reviewing patient-reported outcomes in breast reconstruction identifies various demographic (e.g., age, marital status)17 psychological (e.g., depression, anxiety)5,18, medical (e.g., body mass index)19 and disease/treatment related factors (e.g., cancer type, type and timing of reconstruction, complications)20–22 associated with body image and quality of life. Increasing attention is being given to delivering psychosocial care to cancer patients which specifically targets body image difficulties. Much of this work is based on cognitive-behavioral models of body image disturbance which highlight the importance of addressing maladaptive thoughts, behaviors, and emotions related to one’s appearance.23–25 For a patient struggling with body image concerns, emphasis is placed on acceptance of body image changes and increasing self-confidence in social situations. Key treatment strategies for mental health specialists to manage body image issues in the oncology setting have been described elsewhere,26–29 and it is recognized that treatment should be tailored based upon the distinct phase of the cancer journey. A significant source of distress for cancer patients undergoing reconstructive surgery is related to body image changes they experience during treatment. Unfortunately, much research suggests that physicians are not adept or comfortable with evaluating or managing patient distress. Lack of time is the most frequently reported barrier for medical professionals in being able to identify and manage patient distress.30 Moreover, patients are reluctant to bring up their distress with their oncologists31,32 and this may especially be true for those experiencing body image concerns. It is not uncommon for a cancer patient to worry about being seen as “vain” and experience shame and embarrassment about having body image concerns.26 For these reasons, it is critical to develop a useful screening tool that will facilitate the identification and treatment of patients with body image difficulties in the oncology setting. Validated tools assessing body image in cancer patients are lacking, and we are not aware of any tools developed for the purpose of screening patients for body image. A systematic review by Annunziata et al., found only six questionnaires dedicated to body image assessment for cancer patients. Only one tool was applicable to patients with diverse disease sites, while remaining tools were specific to breast or gastrointestinal cancer.33 None of these tools were identified as offering a gold standard for evaluating body image in the oncology setting, nor were any specifically developed as a screening tool. More recent advancements have been made with the development of assessment tools for breast cancer patients undergoing reconstructive surgery, focused on satisfaction with outcomes and quality of life. Tools such as the Breast Reconstruction Satisfaction Questionnaire (BRECON-31)34 and Breast-Q35 have gained more widespread use, and have undergone extensive validation. However, these tools focus on a specific subset of patients undergoing reconstruction, and again are not intended for use as a screening measure of body image distress. Our goals were to design and evaluate a brief body image screening tool for cancer patients undergoing reconstructive surgery that has the potential to be used as part of routine clinical practice. This tool is needed to assist medical professionals in identifying patients with body image distress who may benefit from a referral for specialized psychosocial care.

Background 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. Methods Prospective participants received questionnaire packages 2 weeks before scheduled follow-up appointments. They self-administered widely used measures of subjective well-being, distress, stigma, self-blame, disfigurement, illness intrusiveness, and post-traumatic growth. Results As hypothesized, stigma correlated significantly and uniquely with negative psychosocial impact, but contrary to common beliefs, reported stigma was comparatively low. Reported stigma was higher in (i) men than women, (ii) lung as compared with head and neck cancer, and (iii) people who were highly disfigured by cancer and/or its treatment. Benefit finding buffered stigma's deleterious effects, and illness intrusiveness was a partial mediator of its psychosocial impact. Conclusions Stigma exerts a powerful, deleterious psychosocial impact in lung and head and neck cancers, but is less common than believed. Patients should be encouraged to remain involved in valued activities and roles and to use benefit finding to limit its negative effects. Copyright © 2011 John Wiley & Sons, Ltd.

High levels of psychological distress, especially depressed mood, has been discussed in relation to head and neck cancer. Patients with head and neck cancer face functional impairment and disfigurement caused by cancer and/or its treatment. Psychosocial factors that predict depressed mood in this population have not been well elucidated. The aim of this study is to examine the psychosocial and medical risk factors for depressed mood in ambulatory head and neck cancer patients. Depressed mood and coping style were assessed with the Profile of Mood States (POMS) and the Mental Adjustment to Cancer (MAC) scales, respectively, in 99 ambulatory head and neck cancer patients. Simultaneously, patients' social support and satisfaction with it, and sociodemographic and medical data were obtained. Multiple regression analysis revealed that advanced disease, being unmarried, and helpless/hopeless coping were significantly associated with depressed mood. The results suggest that we should identify these factors and target psychosocial intervention for those patients most at risk.