Prostate cancer and supportive care: a systematic review and qualitative synthesis of men's experiences and unmet needs

Prostate cancer is the second most common cancer in men worldwide, accounting for an estimated 1.1 million new cases diagnosed in 2012 (www.globocan.iarc.fr). Currently, there is a lack of specific guidance on supportive care for men with prostate cancer. This article describes a qualitative systematic review and synthesis examining men's experience of and need for supportive care. Seven databases were searched; 20 journal articles were identified and critically appraised. A thematic synthesis was conducted in which descriptive themes were drawn out of the data. These were peer support, support from partner, online support, cancer specialist nurse support, self‐care, communication with health professionals, unmet needs (emotional support, information needs, support for treatment‐induced side effects of incontinence and erectile dysfunction) and men's suggestions for improved delivery of supportive care. This was followed by the development of overarching analytic themes which were: uncertainty, reframing, and the timing of receiving treatment, information and support. Our results show that the most valued form of support men experienced following diagnosis was one‐to‐one peer support and support from partners. This review highlights the need for improved access to cancer specialist nurses throughout the care pathway, individually tailored supportive care and psychosexual support for treatment side effects.

Related papers:

title: Estimates of cancer incidence and mortality in Europe in 2008.
abstract: Up-to-date statistics on cancer occurrence and outcome are essential for the planning and evaluation of programmes for cancer control. Since the relevant information for 2008 is not generally available as yet, we used statistical models to estimate incidence and mortality data for 25 cancers in 40 European countries (grouped and individually) in 2008. The calculations are based on published data. If not collected, national rates were estimated from national mortality data and incidence and mortality data provided by local cancer registries of the same or neighbouring country. The estimated 2008 rates were applied to the corresponding country population estimates for 2008 to obtain an estimate of the numbers of cancer cases and deaths in Europe in 2008. There were an estimated 3.2 million new cases of cancer and 1.7 million deaths from cancer in 2008. The most common cancers were colorectal cancers (436,000 cases, 13.6% of the total), breast cancer (421,000, 13.1%), lung cancer (391,000, 12.2%) and prostate cancer (382,000, 11.9%). The most common causes of death from cancer were lung cancer (342,000 deaths, 19.9% of the total), colorectal cancer (212,000 deaths, 12.3%), breast cancer (129,000, 7.5%) and stomach cancer (117,000, 6.8%).

title: Self‐management for men surviving prostate cancer: a review of behavioural and psychosocial interventions to understand what strategies can work, for whom and in what circumstances
abstract: In the context of increasing prostate cancer survivorship, evidence of unmet supportive care needs and growing economic health‐care restraints, this review examined and evaluated best approaches for developing self‐management programmes to meet men's survivorship needs.

title: The impact of supportive nursing care on the needs of men with prostate cancer: a study across seven European countries
abstract: Prostate cancer is for many men a chronic disease with a long life expectancy after treatment. The impact of prostate cancer therapy on men has been well defined, however, explanation of the consequences of cancer treatment has not been modelled against the wider variables of long-term health-care provision. The aim of this study was to explore the parameters of unmet supportive care needs in men with prostate cancer in relation to the experience of nursing care.A survey was conducted among a volunteer sample of 1001 men with prostate cancer living in seven European countries.At the time of the survey, 81% of the men had some unmet supportive care needs including psychological, sexual and health system and information needs. Logistic regression indicated that lack of post-treatment nursing care significantly predicted unmet need. Critically, men’s contact with nurses and/or receipt of advice and support from nurses, for several different aspects of nursing care significantly had an impact on men’s outcomes.Unmet need is related not only to disease and treatment factors but is also associated with the supportive care men received. Imperative to improving men’s treatment outcomes is to also consider the access to nursing and the components of supportive care provided, especially after therapy.

title: The supportive care needs of men with prostate cancer (2000)
abstract: The diagnosis and subsequent treatment of prostate cancer is followed by a range of significant disease specific and iatrogenic sequelae. However, the supportive care needs of men with prostate cancer are not well described in the literature. The present study assesses the supportive care needs of men with prostate cancer who are members of prostate cancer self‐help groups in Queensland, Australia. In all, 206 men aged between 48 and 85 years (mean=68) completed the Supportive Care Needs Survey (SCNS) (62% response). The SCNS is a validated measure assessing perceived need in the domains of psychological needs, health system and information needs, physical and daily living needs, patient care and support, and sexuality. Items assessing need for access to services and resources were also included.

title: Supportive care needs of men living with prostate cancer in England: a survey
abstract: Men with prostate cancer have various treatment options depending upon their stage of disease, age and presence of comorbidity. However, these treatments typically induce side effects, which generate currently ill-defined supportive care needs. This study examined the supportive care needs of men with prostate cancer within England. A postal questionnaire survey was conducted in six acute NHS Trusts. Seven hundred and forty-one men with prostate cancer participated. They had been diagnosed 3–24 months prior to the survey and had received various treatments. Men surveyed had specific and significant unmet supportive care needs. Areas of greatest need are related to psychological distress, sexuality-related issues and management of enduring lower urinary tract symptoms. High levels of psychological distress were reported, and those reporting psychological distress reported greater unmet supportive care needs. Unmet sexuality-related need was highest in younger men following radical prostatectomy. Lower urinary tract symptoms were almost universal in the sample. Perceived quality of life varied; men unsure of their remission status reported lowest quality of life. Psychological distress impacts significantly on perceived unmet need and is currently not being assessed or managed well in men living with prostate cancer in England.

title: Hegemonic Masculinity and the Experience of Prostate Cancer: A Narrative Approach
abstract: Prostate cancer is a major health problem—one that inevitably challenges men's notions about themselves and their expressions of masculinity. As part of a larger study investigating linkages between masculinity and prostate cancer, this article focuses on the narratives of three men with prostate cancer—all of whom shed light on contemporary forms of hegemonic masculinity. Multiple interviews were conducted with study participants, capturing experiencesboth prior to and following cancer diagnosis. Analysis of individual narratives showed how social factors such as work and family influenced (and were influenced by) men's experiences with illness. All three men were forced to renegotiate their performances of masculinity—with this renegotiation mostly occurring within the parameters of performance consistent with hegemonic masculinity. However, there was also some evidence of shifts into new socialterritory and new expressions of masculinity. In contrast to more traditional, trait-based approaches to studying men's experiences, a narrative approach allows social scientists to do justice to the temporal realities and contextual complexities of men's lives. Men will be better understood as more attention is paid to the actual shape of individual lives.

title: “I don’t want to be an artificial man”: Narrative reconstruction of sexuality among prostate cancer survivors
abstract: After interviewing prostate cancer support group members, I use narrative analysis to examine survivors’ post-illness stories of changes in sexual activity and identity. The main events in the narratives were the choice of a treatment option and the post-treatment changes in survivors’ sex lives, whether described as the end of the sex life or the beginning of a modified one. Survivors characterized their wives as uninterested in sex and seldom described support group peers as helpful sources of sex-related information. The value of health took precedence over the desire for sex among men who experienced erectile dysfunction. My observations suggest implications related to (a) masculine identity, (b) sex among the elderly, (c) the social construction of sexuality, (d) defining and redefining sexuality, (e) physician-patient interaction, (f) sex talk among social support group members, and (g) the apparent clash between the values of sex and health.

title: Renegotiating Masculine Identity After Prostate Cancer Treatment
abstract: Because little is known about how low-income Latino and African American men attribute meaning and adapt to prostate cancer treatment—related symptoms relative to masculine identity, in this study we sought to develop a descriptive model of this process. Using qualitative methods, 60 Latino and 35 African American/Black men were interviewed by language- and ethnicity-matched male interviewers using a semistructured guide. Interviews were audiotaped and transcribed verbatim. Spanish transcripts were rigorously translated to produce English transcripts. Analysis using grounded theory techniques found that men constructed masculine identities that were influenced by early experience, challenged by several factors including prostate cancer treatment, and underwent a renegotiation process that resulted in the maintenance of their identity as men. Development and testing of interventions that support this process will facilitate the adaptation process for men in a culturally relevant manner.

title: Methods for the thematic synthesis of qualitative research in systematic reviews
abstract: BackgroundThere is a growing recognition of the value of synthesising qualitative research in the evidence base in order to facilitate effective and appropriate health care. In response to this, methods for undertaking these syntheses are currently being developed. Thematic analysis is a method that is often used to analyse data in primary qualitative research. This paper reports on the use of this type of analysis in systematic reviews to bring together and integrate the findings of multiple qualitative studies.MethodsWe describe thematic synthesis, outline several steps for its conduct and illustrate the process and outcome of this approach using a completed review of health promotion research. Thematic synthesis has three stages: the coding of text 'line-by-line'; the development of 'descriptive themes'; and the generation of 'analytical themes'. While the development of descriptive themes remains 'close' to the primary studies, the analytical themes represent a stage of interpretation whereby the reviewers 'go beyond' the primary studies and generate new interpretive constructs, explanations or hypotheses. The use of computer software can facilitate this method of synthesis; detailed guidance is given on how this can be achieved.ResultsWe used thematic synthesis to combine the studies of children's views and identified key themes to explore in the intervention studies. Most interventions were based in school and often combined learning about health benefits with 'hands-on' experience. The studies of children's views suggested that fruit and vegetables should be treated in different ways, and that messages should not focus on health warnings. Interventions that were in line with these suggestions tended to be more effective. Thematic synthesis enabled us to stay 'close' to the results of the primary studies, synthesising them in a transparent way, and facilitating the explicit production of new concepts and hypotheses.ConclusionWe compare thematic synthesis to other methods for the synthesis of qualitative research, discussing issues of context and rigour. Thematic synthesis is presented as a tried and tested method that preserves an explicit and transparent link between conclusions and the text of primary studies; as such it preserves principles that have traditionally been important to systematic reviewing.

title: Characteristics Contributing to an Enduring Prostate Cancer Support Group in an Asian and Pacific Islander Community
abstract: Although many cancer survivors address cancer-related concerns through contact with fellow patients in support groups, few reports have focused on the experience of Asians and Pacific Islanders. This report summarizes the results of semistructured interviews with 24 participants in a well-established prostate cancer support group in Hilo, Hawaii, 17 of whom were of Asian or Pacific Islander ancestry. According to the men, the benefits of group participation include camaraderie, information, improved coping ability, and ability to discuss medical experiences. The group's success was attributed to its peer leadership, participation of peer-professionals, and members' widespread participation in a variety of activities. The group contributed to the larger community by organizing specific events for family members, interacting outside the meetings, and tailoring group activities to reflect multicultural preferences for communication. The experiences of the Hilo group contrast with the experiences of other support groups reported in the literature. Although information seeking in the group was important, emotional and social support was at least as significant, and use of humor and discussions of negative experiences regarding medical care were common. The group's distinctive features may stem from the values and norms of its close-knit, multiethnic, predominantly Asian and Pacific Islander small-town community. The findings imply that for prostate cancer support groups, one “size” does not fit all men and communities and that tailoring support groups to the intended participants is crucially important.

title: The eMale
abstract: This article argues that experiences of, and attitudes towards, online communities are deeply embedded in understandings of masculinity, the perceived character of the Internet, and changes in the roles of the patient and the expert within decision-making processes. Drawing on the accounts of a group of Australian men with prostate cancer and prostate cancer specialists, this qualitative study explores experiences of online support groups. Results point to three unexplored and important factors influencing how both patients and clinicians perceive and experience online support. First, online support groups provide some men with a method of managing constraints posed by dominant constructions of masculinity within their experiences of prostate cancer, allowing for increased sharing and intimacy by limiting inhibitions associated with face-to-face encounters. However, other men view online support groups as havens for deception and misinformation, and computer-mediated communication as a highly problematic form of social interaction. Finally, this article shows how some medical specialists experience online support groups as a threat to their expert status and control over decision-making processes, outlining the nature and possible implications of their responses to this threat.

title: The needs of men with prostate cancer: results of a focus group study.
abstract: Prostate cancer is the most common type of cancer diagnosed in men in the United States and accounts for 43% of all newly diagnosed malignancies. This year, approximately 218,890 men were diagnosed with prostate cancer (American Cancer Society, 2007). Of all men diagnosed with cancer each year, more than 30% will be diagnosed with prostate cancer. Receiving a diagnosis of cancer can be very difficult and emotionally challenging for patients and their families. There is limited research surrounding the psychosocial and educational needs of men diagnosed with prostate cancer and the effectiveness of existing support services for this population. The purpose of this qualitative and grounded theory study was to explore the psychosocial needs of men with prostate cancer using a previously developed cancer model. Demographic questionnaires and focus groups were used with a sample of 16 men aged between 49 and 81 years. The results of the qualitative analysis revealed consistency with a previously tested breast cancer model and identified unique concerns of men within three stages of the prostate cancer experience. Implications for nursing research and practice are presented.

title: Is seeing a specialist nurse associated with positive experiences of care? The role and value of specialist nurses in prostate cancer care
abstract: BackgroundSpecialist nurses may play an important role in helping to improve the experiences of patients with prostate cancer, however there is concern that the specialist nurse role is under threat in the UK due to financial pressures in the NHS. This study explored the role and value of specialist nurses in prostate cancer care via a survey and patient interviews.MethodsThis paper reports findings from two studies. A survey of patients from three hospitals across the UK (289/481, 60%), investigated whether patients who saw a specialist nurse had different experiences of information provision and involvement in decision-making, to those who did not. Qualitative interviews were also carried out with 35 men recently tested or treated for prostate cancer, recruited from two hospitals in the UK. Interviews explored patients' views on the role and value of the specialist nurse.ResultsSurvey findings indicated that patients who saw a specialist nurse had more positive experiences of receiving written information about tests and treatment, and about sources of advice and support, and were more likely to say they made the treatment decision themselves. In interviews, patients described specialist nurse input in their care in terms of providing information and support immediately post-diagnosis, as well as being involved in ongoing care. Two key aspects of the specialist nurse role were seen as unique: their availability to the patient, and their ability to liaise between the patient and the medical system.ConclusionThis study indicates the unique role that specialist nurses play in the experience of patients with prostate cancer, and highlights the importance of maintaining specialist nurse roles in prostate cancer care.

title: Men's experiences following laparoscopic radical prostatectomy: a qualitative descriptive study.
abstract: Laparoscopic radical prostatectomy is a less invasive surgical option to the open retropubic approach for prostate cancer that will likely grow in popularity commensurate with availability. However, since little is known about what men experience throughout the postoperative period, our ability to ensure informed decision-making remains compromised.



The aim of this study was to explore what men experience following laparoscopic radical prostatectomy and how adequately their pre- and postoperative needs are being met.



This was a qualitative descriptive study.



Nineteen men, aged 46-76, who had undergone laparoscopic radical prostatectomy within the previous 3-6 months period were recruited from the treatment and control arms of a randomized controlled trial. Men who were not in the trial were recruited via letters mailed from surgeons' offices.



Data were generated during loosely structured individual (n=5) and focus group interviews (n=3). Inductive content analysis helped to ensure that participants' perspectives were accurately represented.



Men had actively sought information prior to surgery but seemed unprepared for the intensity of discomfort and incontinence they experienced. They particularly valued opportunities for informal discussion with former prostatectomy patients; however, erectile dysfunction remained a major concern and most did not know where to turn for help.



Nurses could play a pivotal role in the laparoscopic radical prostatectomy experience by ensuring men are well informed both pre- and postoperatively. Facilitating contact with other men who have undergone laparoscopic radical prostatectomy (LRP) and initiating conversation about potential side-effects such as urinary incontinence and erectile dysfunction would be an important starting point. Particularly in light of early discharge and concerns regarding erectile dysfunction, additional follow-up seems warranted.

title: The Self-Management of Uncertainty Among Men Undertaking Active Surveillance for Low-Risk Prostate Cancer
abstract: Asymptomatic men with low-risk, early-stage prostate cancer are eligible for active surveillance (AS), which offers a means to monitor the cancer while delaying treatment. However, AS operates within a unique set of circumstances that advocate monitoring, rather than immediate treatment, and men's health practices are central to coping with the inherent uncertainty of living with an untreated cancer. A qualitative study was completed to describe the range of men's self-management strategies used to overcome AS-related uncertainty. The study findings reveal two strategies. First, positioning prostate cancer as benign through stoicism and solitary discourses were common to men intent on “living a normal life.” Second, men committed to “doing something extra” complemented AS protocols, and often collaborated with their wives to focus on diet as an adjunct therapy. Although most participants exhibited typical men's health practices, it is clear that tailored AS psychosocial interventions will benefit men and their families.

title: Working patterns and perceived contribution of prostate cancer clinical nurse specialists: a mixed method investigation.
abstract: Prostate cancer is prevalent worldwide. In England, men living with this malignancy often report unmet psychological, informational, urological and sexual needs. Their experience of care is correspondingly lower than that of other patient groups with cancer. To address this, prostate cancer clinical nurse specialist posts were established across England and Scotland. Their intent was to support men with this form of cancer, enhance symptom management and improve quality of service provision.



The research sought to investigate prostate cancer clinical nurse specialists' roles, determine whom they targeted services at, and determine their work practices and perceived contribution.



A mixed method multi-site exploratory-descriptive design was employed.



Data were collected across four acute NHS Trusts-one in the South of England, one in the Midlands, one in Northern England and one in Scotland, respectively.



Participants included 4 prostate cancer clinical nurse specialists, 19 of their clinical colleagues and 40 men they provided care to.



Data were collected through nurse specialists' completion of a Diary and Contact Sheets. Interviews were conducted concurrently with the nurses, stakeholders they worked alongside and patients on their caseload. Data were collected between November 2004 and January 2006.



There was great variation in the qualifications and experience of nurse specialists and in the services they provided. Services ranged from generic support and information provided across the disease trajectory to provision of services to meet specific care needs, e.g. providing nurse-led clinics for erectile dysfunction. Patients and members of the multidisciplinary team welcomed the introduction of nurse specialists but were aware they could become over burdened through their rapidly growing caseloads.



Variability in services provided by the prostate cancer nurse specialists arose from differences in local demand for nursing services and the skills and experiences of those appointed. Such variability - whilst understandable - has implications for access and equity across patient groups. Further, it can compromise efforts to define clinical nurse specialists' contribution to care, can impede others' expectation of their role, and render their outcomes difficult to evaluate.

title: Finding a pathway: information and uncertainty along the prostate cancer patient journey.
abstract: To investigate the role of information in mediating the potential negative effects of uncertainty in prostate cancer in relation to the individual patient journey, conceptualized as the individual's response to his disease over time.



A qualitative methodology was adopted to investigate men's constructions of their experience of information and its changing role in the management of uncertainty along the pathway of care. A cross-sectional design allowed comparison of the responses of men at similar stages and along different time points in the cancer pathway. Data collection was undertaken via focus group discussions and individual interviews.



Men from 4 weeks post-diagnosis to palliative care were recruited from hospital out-patient clinic registers and a local support group. Seven focus groups and 22 semi-structured interviews were held involving a total of 22 participants. Transcripts were analysed through a process of theme comparison.



Findings suggest that uncertainty is both multifaceted and changing. Its impact is affected by a range of personal, disease related, and social factors. For some men it may bring about positive readjustment rather than a negative response. Effective communication of information by health professionals provides reassurance, knowledge, and understanding the balance of which varies over time and between individuals.



Health professionals may contribute to the reduction of the negative effects of uncertainty through communication of information regarding process of care as well as medical issues. Strategies tailored to individual differences in information requirements and to changing needs may facilitate positive adjustment.

title: Hit by Waves-Living With Local Advanced or Localized Prostate Cancer Treated With Endocrine Therapy or Under Active Surveillance
abstract: Previous studies of living with prostate cancer have shown that the illness and the treatment cause physical as well as psychosocial problems.  The aim of this study was to illuminate men's experiences living with localized or local advanced prostate cancer when curative treatment such as surgery or radiation therapy is not an option at the time of diagnosis.  The study was conducted via qualitative interviews, using a phenomenological hermeneutic approach. Ten men treated with endocrine therapy or under active surveillance were interviewed.  Being diagnosed with prostate cancer was described as a shock, with different aspects of the illness revealed gradually. The limited amount of time available for meeting with health care providers contributed to patients' feelings of being left alone with difficulty getting information and help. Sexual and urinary problems were perceived as a threat to their manhood. The spouses provided the closest everyday support.  The life situation of these patients can be understood as living in a "state of readiness," expecting something to happen regarding their illness, and not always knowing where to get help.  The results confirm existing knowledge of patient's experiences in living with prostate cancer regarding the initial shock perceived by the patients, the bodily alterations, and the important role of their spouses. Nurses, as well as general practitioners, must play a more active role in follow-up to ensure that the men and their spouses receive better help and support.

title: Men's experiences of radical prostatectomy as treatment for prostate cancer.
abstract: The aim of this study was to provide a retrospective view of men's experiences of the prostate cancer treatment journey from initial diagnosis through to completion of their surgery and beyond.



A qualitative, descriptive design was employed. A volunteer sample (n = 8) of men 15 years or less post radical prostatectomy was recruited through a prostate cancer support group M.A.C. (Men Against Cancer). Interviews were taped and transcribed verbatim. Data were analysed using qualitative thematic content analysis.



Men identified a number of themes related to their prostate cancer diagnosis, subsequent surgery and life post surgery. These included the process of diagnosis, support, normalisation, the importance of information, defining moments and primary concerns.



Qualitative, descriptive research provides a platform for men to share their experiences of the prostate cancer journey. Healthcare professionals should be alert to the factors which patients consider important during their treatment trajectory. These qualitative interviews provide much needed knowledge in relation to men's experience of the prostate cancer treatment trajectory. In a healthcare system which increasingly values the 'patients view' this type of information is vital in order to tailor healthcare services to meet the unique needs of each patient.

title: The supportive care needs of men with advanced prostate cancer.
abstract: To better understand the priority supportive care needs of men with advanced prostate cancer.



Qualitative, descriptive study.



Outpatient cancer center and urology clinics in central western Ontario, Canada.



12 men with hormone-sensitive prostate cancer and 17 men with hormone-refractory prostate cancer.



Patients participated in focus groups and interviews that examined their supportive care needs, their priority needs, and suggestions for improvements to the delivery of care. Tape-recorded focus group discussions and interviews were organized using NVivo software.



Patients' supportive care needs.



Participants identified prostate cancer-specific information and support to maintain their ability "to do what they want to do" as priority needs. Both hormone-sensitive and hormone-refractory groups cited problems with urinary function, the side effects of treatment, fatigue, and sexual concerns as major functional issues. Participants experienced emotional distress related to diagnosis and treatment.



A priority health need for men with advanced prostate cancer is to improve or maintain functional abilities. In addition, men require support to meet their stage-specific information needs and to address concerns about the diagnosis and ambivalent feelings about past treatment decisions.



Nurses could play an important role in addressing men's information needs and providing emotional support. The complex care needs of men with advanced prostate cancer provide opportunity for the development of advanced practice nurse roles that would use the clinical and nonclinical aspects of the role.

title: 'It don't make sense to worry too much': the experience of prostate cancer in African-Caribbean men in the UK.
abstract: The incidence of prostate cancer among African-Caribbean men in the UK is three times that among men from the majority population. Little attention, however, has been given to the perceptions and experiences of treatment and care of men from these communities with prostate cancer. This qualitative study is the first such investigation, situating men's accounts within the context of their personal history and social environment. Using a community-based, snowball sampling method, 16 first generation African-Caribbean men living in Central England were recruited. Similarities and divergence in men's experience were identified through thematic analysis of interview transcripts. Men's responses to their situation were influenced by aspects of migration and historical context as well as culture. While medical treatment was highly valued, common difficulties were compounded by problems of health professional-patient communication, stereotyping and insensitivity of some staff. Lack of coordination between services and agencies adversely affected the well-being of frail men and widowers. Findings suggest the need for a more proactive approach to giving and eliciting information combined with cultural diversity training. More systematic referral procedures and information exchange between African-Caribbean men with prostate cancer and their general practitioner, hospital, social care and voluntary agencies, churches and community organisations are indicated.

title: "I wish I'd told them": a qualitative study examining the unmet psychosexual needs of prostate cancer patients during follow-up after treatment.
abstract: To gain insight into patients' experiences of follow-up care after treatment for prostate cancer and identify unmet psychosexual needs.



Semi-structured interviews were conducted with a purposive sample of 35 patients aged 59-82 from three UK regions. Partners were included in 18 interviews. Data were analyzed using constant comparison.



(1) Psychosexual problems gained importance over time, (2) men felt they were rarely invited to discuss psychosexual side effects within follow-up appointments and lack of rapport with health care professionals made it difficult to raise problems themselves, (3) problems were sometimes concealed or accepted and professionals' attempts to explore potential difficulties were resisted by some, and (4) older patients were too embarrassed to raise psychosexual concerns as they felt they would be considered 'too old' to be worried about the loss of sexual function.



Men with prostate cancer, even the very elderly, have psychosexual issues for variable times after diagnosis. These are not currently always addressed at the appropriate time for the patient.



Assessments of psychosexual problems should take place throughout the follow-up period, and not only at the time of initial treatment. Further research examining greater willingness or reluctance to engage with psychosexual interventions may be particularly helpful in designing future interventions.

title: Mindfulness groups for men with advanced prostate cancer: a pilot study to assess feasibility and effectiveness and the role of peer support
abstract: PurposeMen diagnosed with advanced prostate cancer experience higher psychological distress and greater unmet supportive care needs than men with localized disease. A mindfulness-based cognitive therapy group intervention was pilot tested for acceptability and effectiveness in this patient group.MethodsNineteen men were initially recruited to three groups and 12 completed final assessments. Outcomes assessed included anxiety, depression, cancer-related distress, prostate cancer-specific quality of life, and mindfulness skills at baseline, immediately, and 3 months post-intervention. Satisfaction measures and in-depth interviews were undertaken post-intervention to describe men's personal experiences of the groups.ResultsSignificant improvements were observed for anxiety (p = 0.027), avoidance (p = 0.032), and mindfulness skills (p = 0.019), with a trend for a reduction in fear of cancer recurrence (p = 0.062). Effect sizes were moderate to large. A shared group identity, acceptance of, and learning from other group members were key aspects of the group context that contributed to acceptance of progressive disease.ConclusionsMindfulness-based group interventions appear to have utility in this patient group and show promise for reducing anxiety, avoidance, and fear of cancer recurrence. Peer learning appeared to be helpful in generating acceptance of advancing disease.

title: What men say about surviving prostate cancer: complexities represented in a decade of comments.
abstract: The experience of men who have completed cancer treatment and transitioned into survivorship is not well understood; therefore, a qualitative, descriptive, narrative analysis was conducted with open-ended questions that participants responded to annually during the course of a 10-year period. The participants expressed that the experience was complex and three themes were identified: "symptoms," "can't go back," and "needs." Time also emerged as an important concern. Participants indicated that sexual and physical symptoms impacted their entire life and that acknowledgment, information, and help from others were important to their recovery. Returning to baseline functioning was no longer possible; rather, a new normal now existed. The findings will help oncology nurses better understand the experience of being a prostate cancer survivor. The need for long-term interventions with information delivered prior to, during, and beyond the treatment process was identified. Clinical interventions should move toward a more integrated approach that helps men develop their new normal.

title: The Prostate Cancer Journey: Results of an Online Survey of Men and Their Partners
abstract: The initial impact of treatments for men with prostate cancer is well reported in the literature. Less is known about the psychosocial needs of these men as their journey after diagnosis and treatment continues into the months and years.  The objective of this study was to examine and understand the supportive care needs of men diagnosed and treated for prostate cancer at key identifiable periods of their cancer journey.  An international Web-based survey was conducted in 2012, investigating men’s prostate cancer pathways. The survey was based on substantial qualitative research and assessed for validity and reliability before piloting. To provide a unique insight into men living with prostate cancer, the views of partners were also elicited.  Completed questionnaires were obtained from 193 men and 40 partners from 6 nations. The physical and psychosocial impact of treatment and need for support varied along the cancer journey. Fear, distress, loss, regret, anxiety, low self-esteem, depression, changes in sexuality, masculinity, and relationships were also described by both men and partners as adverse effects of the diagnosis and treatment for prostate cancer.  Wives and partners are a key psychosocial support to men with prostate cancer. They may also provide valuable insight into men’s supportive care needs that men are often unable to recognize themselves.  Findings suggest that wives and partners of men with prostate cancer can provide nurses and healthcare authorities with a powerful and unique resource in providing supportive care for men who are challenged by prostate cancer.

title: Understanding the Psychosocial Issues of African American Couples Surviving Prostate Cancer
abstract: African Americans are disproportionately affected by prostate cancer, yet less is known about the most salient psychosocial dimensions of quality of life. The purpose of this study was to explore the perceptions of African American prostate cancer survivors and their spouses of psychosocial issues related to quality of life. Twelve African American couples were recruited from a National Cancer Institute Comprehensive Cancer Center registry and a state-based non-profit organization to participate in individual interviews. The study was theoretically based on Ferrell’s Quality of Life Conceptual Model. Common themes emerged regarding the psychosocial needs of African American couples. These themes were categorized into behavioral, social, psychological, and spiritual domains. Divergent perspectives were identified between male prostate cancer survivors and their female spouses. This study delineated unmet needs and areas for future in-depth investigations into psychosocial issues. The differing perspectives between patients and their spouses highlight the need for couple-centered interventions.

title: Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods
abstract: Qualitative research is increasingly valued as part of the evidence for policy and practice, but how it should be appraised is contested. Various appraisal methods, including checklists and other structured approaches, have been proposed but rarely evaluated. We aimed to compare three methods for appraising qualitative research papers that were candidates for inclusion in a systematic review of evidence on support for breast-feeding.  A sample of 12 research papers on support for breast-feeding was appraised by six qualitative reviewers using three appraisal methods: unprompted judgement, based on expert opinion; a UK Cabinet Office quality framework; and CASP, a Critical Appraisal Skills Programme tool. Papers were assigned, following appraisals, to 1 of 5 categories, which were dichotomized to indicate whether or not papers should be included in a systematic review. Patterns of agreement in categorization of papers were assessed quantitatively using κ statistics, and qualitatively using cross-case analysis.  Agreement in categorizing papers across the three methods was slight (κ =0.13; 95% CI 0.06–0.24). Structured approaches did not appear to yield higher agreement than that by unprompted judgement. Qualitative analysis revealed reviewers' dilemmas in deciding between the potential impact of findings and the quality of the research execution or reporting practice. Structured instruments appeared to make reviewers more explicit about the reasons for their judgements.  Structured approaches may not produce greater consistency of judgements about whether to include qualitative papers in a systematic review. Future research should address how appraisals of qualitative research should be incorporated in systematic reviews.

title: Experiences of follow‐up after treatment in patients with prostate cancer: a qualitative study
abstract: To develop an understanding of experiences of follow‐up in patients with prostate cancer, to seek explanations as to why men’s needs might not be well met, and explore views on the possible role of primary care in follow‐up. The experiences of these patients, and views on the delivery of follow‐up care, have been relatively neglected compared to those diagnosed with other cancers.

title: Watching, waiting and uncertainty in prostate cancer.
abstract: This study explores the problems and uncertainties of older men, with prostate cancer, who have undergone watchful waiting and the strategies they use to manage their concerns.



With life expectancy rising, the number of older men with prostate cancer has increased. Nearly 50% of all new prostate cancers are diagnosed in men over 70 years old. For many of these older men, improvements in medical care have increased the likelihood of living for years with prostate cancer. Thus, watchful waiting has been proposed as a reasonable alternative to treatment for older men with localized prostate cancer.



A qualitative, descriptive design was used for this study. The results from interviews with 10 men who were undergoing watchful waiting for prostate cancer were analysed using the Mishel's Reconceptualized Uncertainty in Illness model.



Domains of uncertainty, appraisal of danger and appraisal of opportunity were identified and each was supported by participant's experience.



The results of the study may be used to expand the Uncertainty in Illness model and develop interventions for men undergoing watchful waiting for prostate cancer.


 TO CLINICAL PRACTICE
These findings may be used to enhance current nursing interventions for men electing for watchful waiting as an alternative to treatment for prostate cancer, including patient teaching and support services. Future study should examine the role of nurses in managing uncertainty, especially in patient teaching and in the development, implementation and evaluation of interventions to manage uncertainty.

title: Uncertainty in breast, prostate, and colorectal cancer: implications for supportive care.
abstract: The aim of this paper was to identify and explore the literature for key aspects of uncertainty experienced by patients who have been diagnosed with breast, prostate, or colorectal cancer.


ORGANIZING CONSTRUCT
Throughout the cancer journey important decisions are made about treatments, symptom control, and supportive care and many approaches have been adopted to examine coping and uncertainty associated with a cancer diagnosis. Uncertainty and its associated attributes, such as stress or anxiety, fluctuate across the disease trajectory. To appreciate the changing nature of uncertainty one should consider its effect on specific patient groups by considering the available evidence.



A comprehensive literature search that was focused on reviews and studies about uncertainty in cancer patients was conducted in PubMed and CINAHL. In total, 40 articles were identified that indicated uncertainty in patients with breast, prostate, or colorectal cancer, although the emphasis in each differed according to the nature and treatment of the disease.



Uncertainty was found to comprise three main themes: uncertainty because of limited or lack of information, uncertainty concerning the course and treatment choices related to the disease, and uncertainty related to everyday life and coping with the disease.



Uncertainty influences patients' experiences of their cancer and their coping. Whilst it might be impossible to avoid uncertainty entirely, its negative effects might be ameliorated by understanding patients' specific needs along the disease trajectory of breast, prostate, and colorectal cancer.

title: Reconceptualization of the uncertainty in illness theory.
abstract: The theory of uncertainty in illness has its strongest support among subjects who are experiencing the acute phase of illness or are in a downward illness trajectory (mishel, 1988a). The theory has not addressed the experience of living with continual, constant uncertainty in either a chronic illness or in an illness with a treatable acute phase and possible eventual recurrence. Since uncertainty characterizes many, most prevalent, long-term illness conditions, there is a need to reconceptualize the theory of uncertainty to include the experience of living with continual uncertainty. A close examination of the theoretical statements and the empirical data reported by Mishel resulted in the identification of areas of the theory that could be expanded and reconceptualized. The reconceptualization effort was primarily fueled by questions about the outcome portion of the uncertainty theory. To provide a contest for the expansion and reconceptualization of uncertainty, applicable parts of the theory are summarized below.

title: Social Constraints, Intrusive Thoughts, and Mental Health after Prostate Cancer
abstract: We examined how the social environment influences men's ability to cognitively process and recover psychologically from the trauma associated with prostate cancer. We hypothesized that men who judge others to be unreceptive to their attempts to talk about their cancer-related concerns would have poorer mental health than men with more receptive social networks. In a survey with 1 78 prostate cancer survivors, we measured intrusive thoughts about cancer, social constraints in talking about cancer, avoidance in thinking and talking about cancer, and mental health. There were significant interactive effects of Family/Friend Social Constraints × Intrusive Thoughts and Wife Social Constraints × Intrusive Thoughts on mental health. Plots of the interactions showed a stronger negative relation between intrusive thoughts and mental health among men who felt socially constrained in talking about their cancer than among men who felt unconstrained. In addition, level of constraints from family and friends was positively associated with level of avoidance in thinking and talking about cancer which, in turn, was associated with poorer mental health. These results suggest that supportive social networks may promote psychological adjustment by facilitating cognitive processing of the cancer experience.