Information-seeking behaviour of men newly diagnosed with cancer: a qualitative study

Aim. This paper reports the findings of a study, which explored the information‐seeking behaviour of men newly diagnosed with cancer. Background. There is worldwide recognition that there are significant differences in the way men and women react to and cope with illness, yet there seems to be a lack of research into men's information‐seeking behaviours and how they get their information needs met. The needs of men with cancer has so far received less research attention than women. Methods. A qualitative approach, consisting of in‐depth interviews, was used. A convenient sample of 13 men newly diagnosed with cancer and five healthcare professionals and four lay sources were recruited for this study. Results. Five themes emerged from the data. These were: ‘experiencing discomfort in the healthcare setting’, ‘reliance on partners as information gatherers’, ‘reluctance to explore a range of information sources and support’, ‘unmet information needs’ and ‘getting back to normal’. Together, they provide a perspective on men's information needs and information‐seeking behaviour. Conclusions. Healthcare professionals should be aware that there may be gender differences in how patients cope with their cancer, how they seek information and what information needs they have. Further training and preparation in ‘men's health’ is recommended for all those working with men in cancer care. Relevance to clinical practice. Understanding how, when and in what circumstances men express their information needs will help healthcare professionals to develop strategies to meet these needs and other support needs of men with cancer.     

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

Purpose of the researchPenile 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 men's experiences of treatment for penile cancer. The Patients Experiences of Penile Cancer study (PEPC) aimed to redress this shortfall by exploring men's experiences of surgical treatment for penile cancer.Methods and sampleThe 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 resultsThe 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.ConclusionA 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. Men's 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.     

Valuing people as individuals: development of an instrument through a survey of person-centredness in secondary care

Valuing people as individuals: development of an instrument through a survey of person‐centredness in secondary care Background. Person‐centred care is regarded as the optimum way of delivering health care and is defined as valuing people as individuals ( 51 ). So how can practitioners find out if their service ‘values people as individuals’? Serious doubts have been expressed about the validity of the concept of patient satisfaction and the ability of instruments to measure patients’ views of care. However, qualitative research among people who had experienced problems with their health care has identified an alternative concept better able to articulate patient’s complex experiences ( 10 ). The study found that that patients’ identity was threatened by experiences perceived as dehumanizing, objectifying, disempowering and devaluing. Thus the concept of ‘personal identity threat’ showed the extent to which people felt valued (or not) as individuals. Aim of the study. The aim of the research reported in this paper is to build upon the earlier qualitative work and to identify the frequency and distribution of inpatients’ experiences of ‘personal identity threat’. Design/Methods. The study adopted a cross‐sectional survey design. Ninety‐seven patients from general medical, surgical and otolaryngology wards completed a questionnaire developed from the qualitative study containing items on dehumanization, objectification, disempowerment and devaluation. Findings. Although many patients expressed positive sentiments about their care, problems were highlighted around power/control, involvement in care, and the approachability and availability of staff. The findings also revealed that women were more at risk than men of ‘threats to identity’ in health care settings. Conclusions. Improvements are suggested to help promote a service that truly values people as individuals. These include improving health practitioners’ understanding of the impact of illness on everyday life, promoting practitioners’ listening and enquiring skills, and increasing the ‘visibility’ and availability of staff. Further research should also explore gender and age differences in perceptions of the lay–practitioner relationship.     

The importance of relationships in the experience of cancer: A re-working of the policy ideal of the whole-systems approach

Purpose of the researchThis paper outlines the importance of interpersonal familial relationships in how people experience cancer.Methods and sampleThis paper draws on data from a longitudinal, qualitative study which aimed to explore the experiences of people with cancer within the first year following diagnosis. The sample included fifteen men with colorectal cancer, 3 women with colorectal cancer, twelve women with breast cancer, nine women with gynaecological cancer, six women with lung cancer, eleven men with lung cancer and ten men with prostate cancer. Four people died during the course of the study and ten people chose to withdraw.Key resultsClose interpersonal relationships were clearly core mediating features in how the illness was experienced; for example, presenting for symptom investigation was often the result of ongoing interaction and debate between partners. We use the idea of the ‘joint ownership of cancer’ to elucidate the role of relationships in experiencing and understanding the disease. We propose a re-working of the notion of a whole-systems approach to include not just partnership working within health and social care agencies, but centralising the patient's interpersonal relationships as critical in each aspect of their experience of cancer.ConclusionsThe findings are discussed in terms of the need for service delivery and research to be mindful of the relational aspects and implications of illness. Nurses can play a key role in how this is operationalised in supporting people affected by cancer in the context of their relationships.     

Appreciating the work of nurses caring for adults with intellectual disability and mental health issues

This paper presents findings from a study exploring the nurses’ experience of caring for adults with intellectual disability and mental health issues in inpatient settings. Semi structured interviews were undertaken with 13 nurses from various regions of New Zealand. Methods suggested by an Appreciative Inquiry methodology were used to explore the nurses’ positive experiences of their role. Interviews were transcribed and analysed using open coding and Leximancer (an online data mining tool) analysis to identify dominant themes in the discourse. Analysis revealed themes around ‘Contextualising behaviour’, ‘Communication’, ‘Confidence to care’ and ‘Time’. Participants reflected upon their experiences offering personal interpretations in identifying the aspects of nursing that mattered and that worked. What is shown is that nurses were able to describe a range of creative and adaptive ways of nursing in responding to numerous complex factors they faced in their roles. This suggests a strong foundation on which to advance nursing care in this field.     

‘I‐as‐We’ – Powerful boundaries within the field of mental health coproduction

To date, there is little research on personal crisis experiences of mental health professionals. The aim of this study was to explore some of the reasons for why self‐disclosure is so difficult and how these difficulties may prevent productive forms of coproduction. These questions are addressed both from a psychiatrist's autoethnographic account and from the perspective of a peer worker who works in various coproductive relationships. It is shown that mental health professionals often revert to an “I‐as‐we”, speaking of themselves as a collective and thereby reifying the boundaries between ‘vulnerable users’ and ‘invulnerable professionals’. Ethnographic examples are given, of how these boundaries are produced by a continuous, often invisible, and powerful category work. It is discussed how the dichotomous logic of these boundaries can cause people on both sides to feel reduced to a representation of a certain species, which can take on an existential dimension. Ways out are identified for mental health professionals to self‐reflexively engage with their own crisis experience in coproductive and other relationships.     

Telling tales: a qualitative exploration of how children's nurses interpret work with unaccompanied hospitalized children

Aims and objectives. To explore how qualified children's nurses define, interpret and give meaning to their work with unaccompanied children in hospital. Background. Unaccompanied children are amongst the most vulnerable of the hospital population yet there is little insight into the strategies nurses use to work with them. Design. A qualitative study. Methods. Tape recorded unstructured interviews with four qualified children's nurses. The interviews focused on stories from the participants’ experiences of working with unaccompanied hospitalized children. Transcribed interviews were analyzed for narrative structure to expose how the participants interpreted and gave meaning to their experiences. Findings. The participants’ interpretations of the child ‘alone’ advance previous understandings. The stories unfold into interpreted meanings that shed light on the participant's experiences of sadness and distress. Relevance to clinical practice. The strategy of differentiating between being a nurse and being a parent emerges as an important strategy in interpreting professional boundaries. The conventional meaning of ‘emotional distancing’ is further advanced by the participants’ resiliency at remaining emotionally available to the children and parents in their stories. Further research into the emotional aspects of working with children in hospital is warranted.     

Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care

BackgroundAn emphasis on patient choice in health and social care underpins a growing interest in advance care planning. Few studies have explored the views and experiences of people with advanced lung cancer about discussing their wishes or preferences for end of life care. Evidence suggests that some people may want nurses and other health professionals to initiate discussions about the future. However, there is a lack of evidence about what priority patients facing death give to their preferences and wishes, and how these shape their views about end of life.ObjectivesTo explore the views and experiences of people affected by lung cancer about discussing preferences and wishes for end of life care and treatment.DesignA qualitative study using semi-structured interviews and constant comparative method of analysis to develop a grounded theory.SettingsOne multi-cultural city and one post-industrial town in northern England, UK. Data were collected between 2006 and 2008.ParticipantsInterviews took place with 25 patients with lung cancer and 19 family members.MethodQualitative constructivist grounded theory study.ResultsThe study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. A theory ‘maintaining integrity in the face of death’ is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as ‘normal’ to help them balance living in the present whilst facing death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one's own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death.ConclusionThe study suggests that people facing the end of their life primarily focus on living in the present. The findings suggest that nurses need to develop ways of helping people prepare for the ‘social’ rather than just the physical or ‘medicalised’ aspects of death.     

Disappearing in a Female World: Men’s Experiences of Having an Eating Disorder (ED) and How It Impacts Their Lives

The number of men diagnosed with anorexia has increased, men now representing 25% of those with eating disorders (EDs). Research has mainly been quantitative and female focused, with only two qualitative studies exploring the experiences of men. This study focused on the lived experiences of men diagnosed with an ED, and its impact on ‘everyday’ aspects of their lives. Qualitative research adopting narrative interviews was conducted with seven men aged 23–34 years old. Narrative analysis was used to interpret each individual story, with thematic analysis used to explore commonalities across all seven narratives. Four themes were identified, 1) The Final John Doe; 2) Help! I need somebody - Bedlam revisited; 3) Masculinity; 4) Not Working 9 to 5. Narratives highlight the need for further research if men are to receive appropriate mental health care and better understanding and acceptance on the part of society, service providers, employers and men themselves.     

Communicating good care: A qualitative study of what people with urological cancer value in interactions with health care providers

PurposeCommunication with health care providers is important to help meet cancer patients' information and support needs. It can significantly affect the extent to which patients feel cared for, respected and involved, and it can influence a range of cancer care processes and outcomes. This paper presents findings from a study which explored urological cancer patients' experiences of care, focussing on insights into what they appeared to value in their interactions with health care providers and why.MethodIn-depth interviews were undertaken with 20 men and 6 women with different types of urological cancer at a range of times since diagnosis. Interviews were audio-recorded, transcribed and thematically analysed using an established interpretive approach.ResultsPatients valued being treated as someone who mattered and was worthy of care; being recognised and responded to as an individual; and experiencing support for autonomy/agency. Reasons for their valuations related to the implications of communicative interactions for the ways patients thought health professionals related to them ‘as persons’. Our findings highlight the value of relational aspects of communication for: indicating to patients what clinicians think of their worth; facilitating individualised care; and enabling patients to contribute to their own care.ConclusionsEfforts to improve health care provider-patient communication should attend not only to the transfer of information about the condition and its management but to the range of features of interactions that can signal to people how health care providers relate to them as persons.     

Exploring penile cancer survivors' motivations and experiences of attending a support group: eUROGEN study

The purpose of this study was to explore men ' s motivations and experiences of attending a penile cancer support group and critically analyse whether participating in the support group has an impact on their psychological well‐being. Eleven men attended a focus group facilitated by a cancer nurse specialist and a group facilitator. This was held in the hospital in the same setting as the monthly support group meeting. Written consent was gained. On the day an open question was asked to identify what motivates the men to attend the support group. The results were recorded using a digital audio recording device and then transcribed verbatim. Thematic analysis was then utilised to identify common themes. Six themes were identified as to why these men attended the penile cancer support group on a regular basis: making friendships, supporting others, sharing experiences, peer support, receiving information and raising awareness. Face to face support groups have shown to be a mode of delivering support to men who have been diagnosed and treated for this rare disease. These findings suggest that meeting men with a similar condition and sharing experiences of living with the disease were important to the men participating in this study.     

Evaluation of a clinical needs assessment and exploration of the associated supports for students with a disability in clinical practice: Part 2

Engagement and successful completion of nursing and midwifery programmes may be predicated on the identification and implementation of reasonable accommodations to facilitate clinical learning for students with a disability. This qualitative study aims to evaluate a clinical needs assessment for students with a disability and explore their experiences of support in clinical practice. A purposive sample of year one undergraduate students was used. Four students consented to participate and undertook an individual interview. Their disabilities were categorised as specific learning disability (dyslexia) (n = 3) and mental health (n = 1). Data analysis revealed two main themes ‘students’ experiences of disclosure’ and ‘receiving support’.Findings revealed that all students disclosed on placement, however, the extent of disclosure was influenced by personal and environmental factors. Students used the clinical needs assessment to highlight accommodations to clinical staff on placement. Issues of concern that arose, included communication between all key stakeholders, negative staff attitudes and the need to improve the provision of accommodations.This preliminary evaluation indicates that the Clinical Needs Assessment bridges the gap in provision of student support between higher education and healthcare institutions. Findings suggest that competence based needs assessments can identify individualised reasonable accommodations for students undertaking clinical placements.     

Clinical management of erectile dysfunction

Erectile dysfunction (ED) affects 8% of 40‐year‐old men, increasing to 40% in 60‐year‐old men. It can be the first presentation of vascular disease and the average time between onset of ED and the first coronary vascular event is 3 years. The prevalence of ED is increasing and will continue to increase as the population ages. Prostate surgery commonly causes ED and nurses need to identify men with ED early, as treatment for ED should be commenced at the earliest opportunity provided the man and his partner want to engage in sexual activity. Options for treatment include phosphodiesterase type 5 inhibitors (sildenafil, tadalafil or vardenafil) as required, or ‘once daily’ for tadalafil. Alternative options include urethral pellets, intracavernosal injections, vacuum devices, counselling and penile prosthesis. The selection of treatment is dependent on an accurate assessment of the problem, an estimation of cardiovascular risk and of patient preference.     

Loose nerves and weak blood: a thematic analysis of premature ejaculation in Bangladeshi Muslim men

The objectives of this study were to examine the accounts of Bangladeshi Muslim men with premature ejaculation (PE) and to qualitatively explore self‐reported causation. Twenty‐three men with either lifelong or acquired PE were interviewed using a semi‐structured schedule. Participant's responses were transcribed and analysed using thematic analysis. Three common themes were identified, biomedical, psychological and cultural, that were used to explain PE, with a ‘preference’ for biomedical causation. Each theme had sub‐themes that were used to explain ‘acceptable’ forms of sexual practice and subsequent help‐seeking behaviours. Using thematic analysis, we identified core themes that appear to characterize the way individuals with PE perceive themselves and their interpersonal relationships. Thematic analysis offers a promising tool to explore how men with PE ‘explain’ their sexual responses to themselves and their partners.     

Patients' lived experiences of excisional breast biopsy: a phenomenological study

Aims. The purpose of this study was to explore the lived experience of patients undergoing an excisional breast biopsy. Background. It has been determined that women who feel a lump or a lesion in their breast delay seeking medical treatment because it could be cancer and they might need a mastectomy and/or the cancer may not be treatable. After women go to a health‐care facility and are told that they need to have a biopsy to make a clear diagnosis they want to have the biopsy performed as soon as possible. Method. A phenomenological approach from a Heideggerian hermeneutical perspective was used. Participants were 20 patients who had an excisional breast biopsy in the day surgery of a university research and training hospital general surgery division under general anaesthesia between the dates of 1 December 2004–30 June 2005 and who returned one week later for monitoring, who were over 18 years old and who volunteered to participate in the research. Data were collected using in‐depth interviewing and analysed using the principles of Heideggerian hermeneutics. Results. Three themes were identified: need for information, fear, spiritual needs. Conclusion. It was determined that patients undergoing excisional breast biopsy had significant information and spiritual needs and experienced a fear of having cancer, losing their breasts and dying in surgery. Relevance to clinical practice. Although there are many studies about breast cancer and day surgery patients’ experiences in the literature, no studies were found about patients’ experiences with day surgery excisional breast biopsy procedures. The results provide a possible framework for patient care.     

Worst experiences of pain and conceptions of worst pain imaginable among nursing students

Title. Worst experiences of pain and conceptions of worst pain imaginable among nursing students Aim. This paper is a report of a study to explore nursing students’ own worst experiences of pain as well as their conceptions of the worst pain imaginable. Background. Pain is a personal experience, often assessed using a visual analogue scale. The endpoints of this scale are labelled with the extremes for pain experience (e.g. no pain to worst pain imaginable). People may understand the meaning of ‘no pain’, but it is unclear what meaning they assign to ‘worst pain imaginable’. This indicates that a rating along the Visual Analogue Scale‐line is dependent on the individual’s previous experiences. Methods. Data were collected during the autumn of 2002. In total, 549 nursing students completed a questionnaire focusing on two main questions: ‘What is the worst experience of hurt, ache or pain you have had?’ and ‘What is the worst pain imaginable for you?’ Content analysis was used for data analysis. Results. The students’ worst experience of pain was mostly related to acute or traumatic painful conditions, pain associated with female physiology, inflicted pain, psychological suffering and chronic painful conditions. The worst pain imaginable was described as condition‐related pain, overwhelming pain, experiences of losses, deliberately inflicted pain, psychological suffering and as vicarious pain. Conclusion. The findings imply that nursing students, when they are imagining pain, include dimensions such as hope of relief, grief, control over the situation, powerlessness and empathy for and suffer with other people’s pain. Further research is needed to explore why professional experience as a nurse diminishes the ability to imagine patients’ pain.     

晚期癌症患者临终期真实体验的质性研究

目的深入了解晚期癌症患者临终期的真实体验。方法 2015年7-12月,采用目的抽样法选择上海市某三级甲等医院中医科病房的30例住院癌症患者为研究对象,采用诠释现象学研究方法对其进行半结构式访谈,现场录音,根据诠释学循环原则对转录资料进行主题分析。结果晚期癌症患者临终期的真实体验可归纳为3个类属10个主题,类属一:个人方面,即拖累感、担忧、恐惧、自我封闭;类属二:社会家庭方面,即经济负担、婚姻不幸、癌症歧视;类属三:治疗方面,即求医困难、不良反应大、沟通障碍。结论晚期癌症患者临终期常存在不良情绪及较重的经济负担,医护人员应加强与患者的沟通,积极采取针对性的措施,提高患者的社会支持水平,减轻或消除患者的不良情绪。     

Research on couples: are feminist approaches useful?

Title. Research on couples: are feminist approaches useful? Aim. This paper is an exploration of the utility and value of feminist approaches when undertaking narrative‐based research with partner dyads (within both heterosexual and same sex partnerships) and when researching sensitive issues. Background. Adverse life events or conditions experienced by individuals have been found also to have a negative impact on their partners. Most literature addressing partner issues uses quantitative methods, and existing qualitative research on couples has traditionally interviewed only one person in the partnership or coupled partners together. There is little discussion in the literature about the use of feminist research when researching male perspectives and experiences, and even less discussion of the possibilities that feminist research methods bring to the study of couple dyads. Discussion. Qualitative methodologies informed by feminist perspectives, including issues of reciprocity and self disclosure, can be used to unpack structural, personal and political issues related to couples’ experiences. A feminist approach allows us to show that the origin of oppression is not personal but very much about power and that men as well as women, regardless of their sexuality, may experience the effects of oppression. Narrative and story‐telling complements feminist research because of the value it assigns to the storytellers. Conclusion. To care for women effectively, we must also consider the experiences of their partners as the health of one partner has the potential to impact on the other. The concept of oppression is not absent, but indeed is illuminated, in the lives of some men. Gathering stories using feminist perspectives enhances respect and mutuality in the research process.