Peter Branney

Patients' Experiences of Penile Cancer

Penile cancer is a rare but destructive disease in Western populations. In the United Kingdom, penile cancer accounts for <1% of all new cases of cancer and <1% of deaths due to cancer every year (see Table 1). [Table 1] Surgical removal of the cancer is the primary form of treatment. This involves surgical excision of the primary tumour and of involved inguinal lymph nodes. Chemotherapy and radiotherapy are rarely helpful, with their use restricted either to adjuvant use or for palliative treatment of extensive disease. In treating the primary tumour, the standard of care is to provide a surgical cure (ie, excising the tumour and a margin of normal penile tissue) while maintaining the function of the penis. The traditional view was that at least a 2-cm margin of normal tissue should be removed, but recent publications suggest that more conservative surgery may be safe [1], and [2]. The advantage of such organ-preserving surgery is intuitively advantageous to the patient in that penile function can be better preserved, but the evidence to support this view is limited at present.

‘Think differently and be prepared to demonstrate trust': findings from public hearings, England, on supporting lay people in public health roles

Professional support processes are critical for the establishment and maintenance of community health worker programmes. This paper reports on three public hearings held in England, UK, that were conducted as part of a national study into approaches to develop and support lay people in public health roles. Individuals with relevant theoretical or practical expertise, including lay activists, presented evidence in public as expert witnesses. Formal presentations, questions and plenary discussions were recorded and later analysed as qualitative data. This paper presents the results and critically examines emergent issues relating to the sustainability of lay health worker programmes. Consideration is given to the diversity of contemporary practice in England. Barriers seen to affect sustainability included organizational culture and onerous bureaucratic processes. Major themes emerging from the expert evidence included recruitment and training strategies, financial support and the need for a robust infrastructure. The expert hearings, in creating a public space for deliberation, opened up discussion on the levels and type of programme support required to foster lay health worker programmes. The paper concludes that professional support needs to be accompanied by a reorientation of public services to support lay engagement in programme delivery.

The impact of surgical treatment for penile cancer – Patients' perspectives

PURPOSE OF THE RESEARCH Penile cancer is a rare but highly treatable condition. Whilst over 80% survive for over five years, treatment can have a significant impact on quality of life. There has been little research conducted to date on mens experiences of treatment for penile cancer. The Patients Experiences of Penile Cancer study (PEPC) aimed to redress this shortfall by exploring mens experiences of surgical treatment for penile cancer. METHODS AND SAMPLE The study used a narrative history design in which data were collected using one-on-one semi-structured interviews. Maximum variation sampling was used to acquire the widest possible range of experiences. Twenty-seven interviews of around one hour were conducted with men with an average age of 63 years at diagnosis (range = 41-82). The data were analysed using constant comparison analysis. KEY RESULTS The physical impact of surgery was inter-connected with broader events in the lives of the men experiencing treatment. These experiences cover urinary function, sexual function and sexual relationships, healing and recovery, masculinity, mental well-being, coping and support. CONCLUSION A key area for the development of care is to devise and evaluate procedures for ensuring that men are well-informed about the extent and potential consequences of their treatment. Mens experiences of penile cancer surgery will be informed by a complex web interlaced with their broader lives, making it difficult for health professionals to judge how surgery will impact on a men presenting to them. Further research is required to ascertain the most appropriate strategies for rehabilitation of men experiencing penile cancer surgery.

Public health skills for a lay workforce: findings on skills and attributes from a qualitative study of lay health worker roles

OBJECTIVES To present a typology of attributes associated with lay health worker (LHW) roles drawn from a qualitative study of lay roles in the delivery of public health programmes. STUDY DESIGN Qualitative research study of case studies of public health projects. METHODS Five case studies of public health projects were undertaken, reflecting diverse roles, public health issues and populations. Semi-structured interviews and focus groups were carried out with a sample of 136 stakeholders, including commissioners, practitioners, LHWs and service users. Thematic analysis was conducted within and across cases. RESULTS Findings on the pre-eminence of social skills associated with LHW roles were consistent across all five projects. Being approachable, non-judgemental and responsive to community needs were critical attributes that enabled LHWs to undertake outreach and communicate successfully with programme recipients. Experiential knowledge and cultural understanding were also important qualities. A typology of attributes associated with LHW roles is presented. CONCLUSIONS Social skills, the ability to connect with a community, and the ability to develop respectful relationships are fundamental qualities for LHW roles. Further research would be required to produce a comprehensive map of LHW skills; however, the paper questions assumptions that lay skills are necessarily of a lower order than the professional skill set.

‘Straight to the GP; that would be where I would go’: An analysis of male frequent attenders’ constructions of their decisions to use or not use health-care services in the UK

An important consideration that needs adding to discussions of patient choice and whether or not men are reluctant to use primary care services is that many frequent attenders are male. The aim of this article is to explore how male frequent attenders construct decisions to use or not use health-care services. This is achieved through secondary analysis of baseline interviews with male frequent attenders from the Self Care in Primary Care study. As this was a complex study, a three-step analytic process was employed to incorporate the involvement of multiple researchers working together over a number of years. First, the interviewer summarised each interview and second, the summaries were read as a group to find themes across them. Subsequently, we returned to the interviews to add detail that would further illustrate or challenge the analysis. Participants talked of ‘engaging health and avoiding ill-health’, constructing themselves as embodied, health conscious and rational in a similar vein to constructions of feminine interactions with health. While participants talked of ‘choosing health services’ as if they were drawing upon a range of choices, the dominance of the image of the GP was such that seeing a GP was the only legitimate health choice.

Rewarding altruism: Addressing the issue of payments for volunteers in public health initiatives

Lay involvement in public health programmes occurs through formalised lay health worker (LHW) and other volunteer roles. Whether such participation should be supported, or indeed rewarded, by payment is a critical question. With reference to policy in England, UK, this paper argues how framing citizen involvement in health only as time freely given does not account for the complexities of practice, nor intrinsic motivations. The paper reports results on payment drawn from a study of approaches to support lay people in public health roles, conducted in England, 2007-9. The first phase of the study comprised a scoping review of 224 publications, three public hearings and a register of projects. Findings revealed the diversity of approaches to payment, but also the contested nature of the topic. The second phase investigated programme support matters in five case studies of public health projects, which were selected primarily to reflect role types. All five projects involved volunteers, with two utilising forms of payment to support engagement. Interviews were conducted with a sample of project staff, LHWs (paid and unpaid), external partners and service users. Drawing on both lay and professional perspectives, the paper explores how payment relates to social context as well as various motivations for giving, receiving or declining financial support. The findings show that personal costs are not always absorbed, and that there is a potential conflict between financial support, whether sessional payment or expenses, and welfare benefits. In identifying some of the advantages and disadvantages of payment, the paper highlights the complexity of an issue often addressed only superficially. It concludes that, in order to support citizen involvement, fairness and value should be considered alongside pragmatic matters of programme management; however policy conflicts need to be resolved to ensure that employment and welfare rights are maintained.

Engaging men with penile cancer in qualitative research: reflections from an interview-based study

AIM To explore the challenges of engaging men with penile cancer in qualitative interview research. BACKGROUND Qualitative interviewing offers an ideal tool for exploring mens experiences of illness, complementing and providing context to gendered health inequalities identified in epidemiological research on men. But conducting interviews with men can be challenging and embarking on a qualitative interview study with males can feel like a daunting task, given the limited amount of practical, gender-sensitive guidance for researchers. Reflecting on a researchers experience of conducting qualitative research on men with penile cancer, this paper explores the potential challenges of interviewing this group, but also documents how engagement and data collection were achieved. REVIEW METHODS This is a reflective paper, informed by the experiences of a male researcher (KW) with no nurse training, who conducted 28 interviews with men who had been treated for penile cancer. The researchers experiences are reported in chronological order, from the methodological challenges of recruitment to those of conducting the interview. IMPLICATIONS FOR PRACTICE/RESEARCH The paper offers a resource for the novice researcher, highlighting some advantages and disadvantages of conducting qualitative interview research as a nurse researcher, as well as recommendations on how to overcome challenges. CONCLUSION Engaging men with penile cancer in qualitative interview raises practical, methodological, ethical and emotional challenges for the researcher. However, when these challenges are met, men will talk about their health. Methodological procedures must enable an open and ongoing dialogue with clinical gatekeepers and potential participants to promote engagement. Support from colleagues is essential for any interviewer, no matter how experienced the researcher is.

Choosing health, choosing treatment: patient choice after diagnosis of localized prostate cancer.

Patient choice is nothing new (1) but it is a motif that is increasingly mobilised by politicians, policy-makers, and health service providers across much of the Western world. Despite its global resonance, we want to make the case for considering the complexity of the contexts in which patient choice is offered. In this paper, we consider research in relation to the domain of localised prostate cancer in the UK, specifically to choosing treatment after first diagnosis. Before making some recommendations for research, the UK context is elaborated through a consideration of health policy, which is then related to changes in a specific service (the Yorkshire Cancer Centre) and research on patients’ experiences of treatment.

What is the UK Gender Duty and why is it linked to men's health?

Emerging from contemporary UK equality policy, the Gender Duty is not ostensibly about health, although mens health groups are keen to use it to bring about improvements in the health of men. Nevertheless, the status of mens health as an inequality is contentious and any links to equality policy should not be left unquestioned. In this article, I try to develop a critical but supportive perspective regarding the potential of equality legislation for improving mens health by describing the Gender Duty and exploring the links between equality and human rights and mens health.

Helping men cope with penile cancer

Because penile cancer is rare, affected men are unlikely to meet anyone outside their clinical team who has had direct or indirect experience of their cancer. Resources about the condition and the experiences of other patients will help men learn how to adapt to the changes that they will experience. Alongside …