Help‐seeking behaviour in newly diagnosed lung cancer patients: Assessing the role of perceived stigma

Objective

This study explored help‐seeking behaviours, group identification, and perceived legitimacy of discrimination, and its potential relationship with perceived lung cancer stigma.

Methods

Consecutive consenting adults (n = 274) with a primary diagnosis of lung cancer within the previous 4 months were recruited at 31 outpatient clinics in Australia. A self‐report survey assessed help‐seeking, group identification, perceived legitimacy of discrimination, and perceived lung cancer stigma.

Results

Services providing assistance from health professionals (69.5%) and informational support (68.5%) were more frequently used than emotional‐based support. Only a small proportion (2.6%) of participants were unlikely to seek help from anyone, with the most popular sources of help being the general practitioner (91.0%), and oncologist/treating clinician (81.3%). One‐fifth (21.1%) indicated they identified with being a lung cancer patient, and most did not perceive discrimination against lung cancer patients. Higher perceived lung cancer stigma was significantly associated with greater perceived legitimacy of discrimination (P < 0.001), but not help‐seeking behaviours or group identification.

Conclusions

The relationship between lung cancer stigma and perceived legitimacy of discrimination may guide initiatives to reduce stigma for patients. It is encouraging that perceived stigma did not appear to inhibit help‐seeking behaviours. However, further research in this emerging field is needed to investigate patterns of perceived stigma and help‐seeking over time to identify how and when to offer support services most appropriate to the needs of lung cancer patients.

     

“Hard to reach,but not out of reach”: Barriers and facilitators to recruiting Black African and Black Caribbean men with prostate cancer and their partners into qualitative research

Access and recruitment barriers may have contributed to the underrepresentation of Black African/Caribbean men and their partners in current psychosocial research related to prostate cancer survivors. Whilst some studies have explored recruitment barriers and facilitators from participants’ perspectives, little is known from researchers' point of view. This paper aimed to address this gap in the literature. Recruitment strategies included the following: cancer support groups, researchers’ networks, media advertisement, religious organisations, National Health Service hospitals and snowball sampling. Thirty‐six eligible participants (men = 25, partners = 11) were recruited into the study. Recruitment barriers comprised of gate‐keeping and advertisement issues and the stigma associated with prostate cancer disclosure. Facilitators which aided recruitment included collaborating with National Health Service hospitals, snowball sampling, flexible data collection, building rapport with participants to gain their trust and researcher's attributes. Findings highlight that “hard to reach” Black African/Caribbean populations may be more accessible if researchers adopt flexible but strategic and culturally sensitive recruitment approaches. Such approaches should consider perceptions of stigma associated with prostate cancer within these communities and the influence gatekeepers can have in controlling access to potential participants. Increased engagement with healthcare professionals and gatekeepers could facilitate better access to Black African/Caribbean populations so that their voices can be heard and their specific needs addressed within the healthcare agenda.     

Relationships among optimism,well‐being,self‐transcendence,coping, and social support in women during treatment for breast cancer

Objective: The impact of diagnosis and treatment for breast cancer, stressors that affect emotional well‐being, is influenced by several psychosocial factors and the relationships among them. The purpose of this study was to investigate the relationship between optimism and emotional well‐being (EWB) and the individual and combined mediation of this relationship by perceived social support (SS), problem focused coping (PFC), and self‐transcendence in women with breast cancer during radiation therapy. Methods: Ninety‐three women receiving radiation treatment for breast cancer completed questionnaires that measured EWB, optimism, SS, PFC, and self‐transcendence. Results: Correlational and multiple regression analysis revealed that optimism was positively related to EWB. Of the three mediators, self‐transcendence alone was found to partially mediate the relationship between optimism and EWB. The relationship between optimism and PFC was not significant. Optimism was related to SS, but its indirect effect on EWB through SS did not reach significance. Conclusions and implications: During breast cancer treatment, the positive effects of optimism on EWB are partially mediated by a woman's level of self‐transcendence. Brief screening of women's optimism may help identify women at risk for psychological distress. Early detection and interventions to promote psychological adjustment throughout the cancer trajectory (e.g. enhancing self‐transcendence) should receive attention in future research. Copyright © 2008 John Wiley & Sons, Ltd.     

Determinants of participation in social support groups for prostate cancer patients

OBJECTIVE: This study aims at determining factors related to the intention to participate and actual participation in social support groups for prostate cancer patients, using the framework of the theory of planned behavior. The factors studied are background variables, medical variables, psychosocial variables and attitude, social norms and perceived control. METHODS: From various sources, 238 prostate cancer patients were recruited. The patients filled out a questionnaire, containing standardized instruments on several psychosocial problems and social support, besides questions on demographic and medical characteristics. A specific questionnaire was developed to assess attitude, social norms and perceived control concerning the participation in support groups. From the recruited men, 48 participated in one of the support groups organized by the researchers. RESULTS: Logistic regression revealed that age, lack of social support, a positive attitude and a high perceive control are predictive for the intention to participate in a social support group. Perceived control and the number of prostate-specific problems did predict the factual participation. CONCLUSION: Many prostate cancer patients report psychosocial problems. A more positive attitude towards group participation and the availability of support groups at short travel distance facilitates the interest in and the factual group participation. PRACTICAL IMPLICATIONS: Urologist and urological nurses can play a role in creating a more positive attitude towards group participation, especially if the social support system is weak. Groups should be organized close to patients' place of residence.     

The experiences of gay and bisexual men diagnosed with prostate cancer: results from an online focus group

Research concerning gay and bisexual men diagnosed with prostate cancer is sparse. An online focus group was conducted over a 4‐week period with participants responding to a range of discussion questions concerning their experiences following a prostate cancer diagnosis. Emerging themes were identified and consensus reached. A summary of each of the themes was produced which the coders agreed conveyed the essence of the online discussion. All men who took part in the online focus group reported that prostate cancer significantly impacted their lives. Unexpectedly, some participants actually gained a positive perspective and adopted a sense of empowerment. Participants spoke about emotional responses to a diagnosis of prostate cancer, accessing help and support, the impact of incontinence, the impact of sexual changes on identity, a re‐evaluation of life, changed sexual relationships, the need to find the most suitable healthcare professionals and identification of current needs to improve quality of care. These areas of disquiet suggest that the psychological impact of this disease may be quite significant over an extended time‐frame. Further research needs to be undertaken to assess the degree of distress accompanying the treatment of gay and bisexual men with prostate cancer.     

Longitudinal effects of social support and adaptive coping on the emotional well-being of survivors of localized prostate cancer

Survivors of prostate cancer experience treatment-related physical side effects that can compromise emotional well-being for years post-treatment. There is limited research investigating how social support and the use of coping may affect the emotional well-being of this population following treatment. The aim of this study was to investigate how social support and coping impact emotional well-being 2 years after treatment in survivors of localized prostate cancer who have received either radical prostatectomy or radiotherapy. Psychosocial and disease-specific measures were administered to an ethnically and demographically diverse sample of 180 men treated for localized prostate cancer at baseline and at 2-year follow-up. Regression analyses demonstrated that higher levels of social support at baseline predicted better emotional well-being 2 years later. Furthermore, higher levels of adaptive coping at baseline partially mediated the relationship between social support and emotional well-being. Supportive relationships may contribute to improved emotional well-being following treatment by facilitating the use of adaptive coping strategies. Attention should be given to strengthening social support networks and educating survivors of prostate cancer on adaptive coping techniques.     

Depression,anxiety, post‐traumatic stress disorder and health‐related quality of life and its association with social support in ambulatory prostate cancer patients

MEHNERT A., LEHMANN C., GRAEFEN M., HULAND H. & KOCH U. (2010) European Journal of Cancer Care 19 , 736–745
Depression, anxiety, post‐traumatic stress disorder and health‐related quality of life and its association with social support in ambulatory prostate cancer patients The aim of this study is to identify anxiety, depression and post‐traumatic stress disorder in prostate cancer patients and to investigate the association with social support and health‐related quality of life. A total of 511 men who had undergone prostatectomy were surveyed during ambulatory follow‐up care for an average of 27 months after surgery using standardised self‐report measures (e.g. Hospital Anxiety and Depression Scale, Posttraumatic Stress Disorder Checklist – Civilian Version, Illness‐Specific Social Support Scale, Short‐Form Health Survey). Seventy‐six per cent of patients evaluated their disease as ‘not’ or a ‘little threatening’. The cancer diagnosis and uncertainty were most frequently reported as ‘distressing’, while medical treatment and doctor–patient interaction were most frequently evaluated as ‘most helpful’. The number of patients reporting increased levels of psychological distress was 16%, with 6% demonstrating signs of having severe mental health problems'. No higher levels of anxiety and depression were observed in cancer patients compared with age‐adjusted normative comparison groups. Lack of positive support, detrimental interactions and perceived threat of cancer were found to be predictors of psychological co‐morbidity (P < 0.001). Lack of positive support, detrimental interactions, threat of cancer, disease stage and age significantly predicted mental health (P < 0.001), whereas the impact of social support on physical health was rather weak. Findings emphasise the need for routine psychosocial screening.     

The process and effect of supportive message expression and reception in online breast cancer support groups

Objective: To better understand the process and effect of social support exchanges within computer‐mediated social support (CMSS) groups for breast cancer patients, this study examines (1) the dynamic interplay between emotional support giving and receiving and (2) the relative effects of emotional support giving and receiving on patients' psychosocial health outcomes. Methods: Data was collected from 177 patients who participated in online cancer support groups within the Comprehensive Health Enhancement Support System (CHESS) during the 4‐month intervention. Data included (1) pretest and/or post‐test survey scores of demographic, disease‐related, and psychosocial factors, (2) automatically collected CHESS usage data, and (3) computer‐aided content analysis of social support messages posts. Results: Hierarchical regression analyses revealed that those who receive higher levels of support from others have fewer breast cancer‐related concerns (β = ? 0.15, p<0.05), while those who give higher levels of support to others reframe their own problems in a positive light and adopt more positive strategies for coping (β = 0.16, p<0.05). In addition to these positive effects, partial correlation analysis indicated that these two supportive behaviors are reciprocal. Conclusions: We concluded that supportive exchanges of receiving and giving play positive, but different, roles in predicting psychosocial health outcomes. Moreover, emotional support giving and receiving tend to reinforce each other. Our findings help practitioners, health‐care providers, and health system designers make sense of diverse social support processes among cancer patients participating within CMSS groups. Copyright © 2011 John Wiley & Sons, Ltd.     

Distress,anxiety, depression,and emotional well‐being in African‐American men with prostate cancer

Objective: African‐American men have an incidence rate of prostate cancer 60% higher than Caucasian men. Over one‐quarter of men with prostate cancer experience significant distress, yet psychosocial research has rarely focused on African‐American men. This study presents novel data on emotional well‐being, distress, anxiety, and depression in African‐American men with prostate cancer. Methods: This archival research combined two databases (N=385 and N=367) comprised of 55 African‐American men with prostate cancer. Quality of life was assessed with the Functional Assessment of Cancer Therapy, distress was measured with the Distress Thermometer, and anxiety and depression were measured with the Hospital Anxiety and Depression Scale. African‐American and Caucasian men were matched on age, education, and stage of disease, and compared on emotional well‐being, distress, anxiety, and depression. Results: The mean age of the 55 African‐American was 63 years old. In non‐matched comparison, African‐American men had elevated levels of distress, anxiety, and depression similar to Caucasian men. African‐American men reported high levels of clinically significant distress (>31%) and anxiety (>23%). However, after matching the African‐American and Caucasian men, African‐American men reported higher mean scores on emotional well‐being (p<0.05) and a lower percentage of African‐American men displayed clinically significant depressive symptoms (p<0.05) compared with Caucasian men. Conclusions: After matching the sample, African‐American men seem to display a sense of resilience, demonstrating greater emotional well‐being and a lower incidence of clinically significant depressive symptoms, compared with Caucasian men. This is consistent with cross‐cultural research outside of prostate cancer. Continued research is needed to further elucidate the concept of resiliency in African‐American men with prostate cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

Experiences and psychological distress of spouses of prostate cancer patients at time of diagnosis and primary treatment

We studied experiences and psychological distress of partners of prostate cancer patients at the time of diagnosis and primary treatment and investigated associates of their psychological wellbeing and the emotional social support they give to and receive from the patient. Using a quantitative questionnaire we studied the spouses’ experiences (psychological response and sources of information and emotional support at diagnosis; impacts of prostate cancer on partnership and sex life; impact of side effects of treatment) and the emotional support given and received, and measured their psychological symptom distress. Many spouses reported distressing experiences and all psychological symptoms. Two thirds perceived no impact of the cancer on the partnership while 29% no change in sex life. Distress was associated with a shock, fear of the man's death and impact of side effects, whereas emotional support from a doctor predicted less distress. More support given to the patient was associated with information and emotional support received from a doctor and the patient's sexual dysfunction and pain, and less with experiences of depression, no impact on the partnership and the patient's irritableness. The spouses’ distress was relieved by emotional support from a doctor, which along with received information also enhanced their capability to support the patient.     

Siblings of childhood cancer survivors: How does this “forgotten” group of children adjust after cessation of successful cancer treatment?

Siblings of childhood cancer patients are labelled the “forgotten children” because they experience significant psychosocial distress and are isolated from support systems inside and outside the family. This study investigates the late consequences of the cancer experience for siblings. 60 siblings of cancer survivors were compared with control subjects on measures of psychosocial adjustment. No differences were found between siblings of cancer survivors and controls on emotional and behavioural problems and competence, suggesting that siblings adjust well to the period after cessation of treatment. The effect of demographic, family and disease-related characteristics on the siblings' psychosocial adjustment was limited. Whereas during treatment many psychosocial problems for siblings have been reported, this does not result in a heightened risk of psychological disturbance for siblings as a late effect. The implications for patient care are discussed.     

Life after prostate cancer: A systematic literature review and thematic synthesis of the post‐treatment experiences of Black African and Black Caribbean men

Evidence shows that there are significant ethnic variations in prostate cancer prevalence and outcomes. Specifically, Black African and Black Caribbean men may encounter different post‐treatment experiences than Caucasian men due to their disproportionately higher risk of being diagnosed with advanced prostate cancer. But to date, no review of these experiences has been undertaken. This review synthesised findings from existing literature on the post‐treatment experiences of Black African and Black Caribbean men with prostate cancer and identified pertinent issues which may be useful to inform practice and future research. Seven databases were systematically searched using developed search terms. Four qualitative studies were identified and critically appraised. Findings are summarised under four main themes: symptom experience, healthcare experience, marital and social relationships and coping strategies. Cultural definitions of masculinity influenced the meanings men gave to their post‐treatment experiences. While men's experiences of healthcare varied, the provision of professional support to address their post‐treatment distress was lacking. Men derived most support from wives, peers and church communities. A culturally sensitive approach which recognises diversity among Black African and Black Caribbean populations and treats individuals within their religious and socio‐cultural contexts could potentially improve men's post‐treatment experiences. Areas for further research were also identified.     

Prostate cancer support and advocacy groups: their role for patients and family members

Patients and their families are profoundly affected by the diagnosis of prostate cancer. Competing treatment options and uncertainty regarding the expected course of their disease may provoke strong emotional reactions including depressive symptoms and feelings of overwhelming anxiety. Despite potentially significant implications regarding quality-of-life (QOL) issues associated with various forms of treatment, few studies have focused specifically on the psychologic reactions among men with the disease or their family members. In response to this critical lack of psychosocial information and care, many affected individuals turn to prostate cancer support or advocacy groups for their educational needs, coping strategies, assistance with concerns about medical decisions, and peer networking. This article summarizes the psychologic impact of a prostate cancer diagnosis on patients, spouses, and family members and reviews pertinent advocacy and support information available to men affected by this disease and the physicians who care for them.     

‘As long as the doctors know what they are doing’: trust or ambivalence about patient information among elderly men with prostate cancer?

In recent years prostate cancer has become a significant health problem worldwide with considerable social and economic consequences. Prostate cancer tends to affect older men, and by the time they reach the age of 80, about half of all men will have a form of prostate cancer. This study explored the information and support needs of men aged 75 and over with a diagnosis of prostate cancer. In-depth interviews were conducted with 19 men, to develop ideas and hypotheses to try to understand why older men do not seek information or use helplines to find out about their condition. From the data it appears that some older men do not understand how the treatment for prostate cancer will impact on their quality of life, and yet do not seek further information beyond that which is provided during consultations. Indeed there appears to be certain ambivalence about finding out more information about their condition – partly because of their beliefs about the normal ageing process and partly because of the trust they have in health professionals and their overall satisfaction with the care that they receive.     

Spirituality influences health related quality of life in men with prostate cancer

Spirituality is interdependent with the biological, psychological, and interpersonal aspects of life. Although spirituality has been studied in breast cancer survivors, little work has been done in men with prostate cancer. We sought to determine whether lower spirituality in men with early stage prostate cancer is associated with worse general health-related quality of life (HRQOL), disease-specific HRQOL, or psychosocial health. Two hundred and twenty-two subjects were drawn from a state-funded program providing free prostate cancer treatment to indigent men. Validated instruments captured spirituality, general and disease-specific HRQOL, anxiety, symptom distress, and emotional well-being. We found a consistent relationship between spirituality and the outcomes assessed. Low spirituality was associated with significantly worse physical and mental health, sexual function and more urinary bother after controlling for covariates. All of the psychosocial variables studied reflected worse adjustment in the men with low spirituality. Because the likelihood of prostate cancer survivorship is high, interventions targeting spirituality could impact the physical and psychosocial health of many men.     

Cancer‐related trauma,stigma and growth: the ‘lived’ experience of head and neck cancer

Head and neck cancer is associated with multiple layers of distress including stigma. Stigma attraction or devalued social identity is twofold: (1) it is a cancer associated with lifestyle risk factors and (2) treatment often results in confronting facial disfigurement. Subjective interpretations from nine head and neck cancer patients were analysed using Interpretative Phenomenological Analysis. An overarching superordinate theme – Distress, Stigma and Psychological Growth – encompassed four subordinate themes. Two themes captured the expressed trauma and terror as a result of diagnosis and treatment, and two the redefining of self despite stigma through meaning making. Distress was interpreted as a catalyst for awakening new life interpretations and combined with social support to facilitate two distinct pathways of growth: (1) psychological growth without support; (2) psychological and relational growth with support. Previously unfelt empathetic understanding and altruism for others with cancer emerged from the impact of stigma on ‘self’. Acceptance allowed a new sense of identity that recognised cancer‐related traumatic distress as integral to growth for these participants. The present study offers a unique insight into cancer‐related trauma and stigma and the potential to redefine a more accepting, empathic and altruistic ‘self’ for psychological growth. Implications are discussed.     

Seeking,accepting and declining help for emotional distress in cancer: A systematic review and thematic synthesis of qualitative evidence

Many individuals affected by cancer who experience emotional distress report not wanting help. This review aims to understand why individuals affected by cancer seek, accept or decline help for emotional distress and what influences these actions. A systematic review and thematic synthesis of the qualitative literature was conducted. Using pre‐defined search terms, four electronic databases were searched from January 2000 to May 2016. Pre‐determined inclusion and exclusion criteria were then applied. Identified papers were quality appraised. In total, 32 papers were included in the synthesis. Four themes emerged from data synthesis: attaining normality—the normality paradox; being emotionally literate; perceptions of help; needs‐support gap. Attaining normality is ideographic, context dependent and temporally situated; some individuals maintain normality by not seeking/declining help whereas others seek/accept help to achieve a new normality. Thus, attaining normality paradoxically functions to explain both why individuals sought/accepted help or did not seek/declined help. Data indicate that a context dependent, systems thinking approach is merited to enhance psychosocial care. In particular, clinicians must actively explore the personal context of an individual's distress to ensure that help desired and help offered are mutually understood. Further research must address the limitations of the current evidence base to advance theoretical understanding.     

‘Swimming against the tide’– the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer

CRAWSHAW M.A. & SLOPER P. (2010) European Journal of Cancer Care ‘Swimming against the tide’– the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer Psychosocial research into cancer‐related fertility has concentrated on fertility preservation or adult survivors' concerns. This study reports on its hitherto unreported impact over the time from diagnosis to survivorship. Thirty‐eight men and women aged <30, diagnosed as teens, were recruited to an exploratory qualitative study. Analysis used the constant comparison method, considered conceptually within a lifespan approach. Four key experiences of managing fertility matters influenced, or were influenced by, the aftermath of cancer treatment: (1) prioritising ‘normality’ and marginalising fertility; (2) fertility concerns compromising ‘normality’; (3) ongoing impairments/health concerns mediating fertility matters; (4) fertility concerns dominating the cancer legacy. Professional and social networks provided few opportunities to ask questions, receive information, process feelings or develop handling strategies. Beliefs about the extent of fertility damage did not necessarily relate to information received. For some, fertility matters affected identity, well‐being and life planning as well as reproductive function. This was not restricted to particular ages, life stages, gender or time since treatment ended and was heightened by associated stigma and silence. Opportunities for dialogue should be offered regularly across health and social work disciplines given fertility's psychological and social as well as medical significance.     

A pilot study to determine support during the pre-treatment phase of early prostate cancer

While we know about physicians' involvement in the diagnosis and treatment of prostate cancer, little is known about others who assist men in dealing with the diagnosis and treatment choices, once they are diagnosed with early prostate cancer, but not yet treated. This pilot study explores if men use other sources of support and the roles and functions of support providers. We conducted separate individual interviews with 21 men diagnosed with prostate cancer and 18 persons identified by the diagnosed men as their support provider. Some of the men diagnosed with prostate cancer reported not relying on a support provider, others identified other men already treated for prostate cancer, others' their partner. The provided support consisted of informational and emotional support. Men already treated for prostate cancer provided informational support. Spousal support depended on the diagnosed partner's willingness to accept emotional and/or informational support. Due to the variation in diagnosed men's support, we recommend that physicians inquire about patients' sources of and interest in support. This will reveal which patients rely almost exclusively on physicians, when deciding on a certain treatment.