Personal Health Experiences Research Articles

Reflections on the ethics of Internet newsgroup research

entification of key ethical issues specifically applicable Internet newsgroup research. uggested resolutions to key ethical issues specifically pplicable to Internet newsgroup research. The potential of the Internet as a setting for the duct of health research; particularly into reported nt experiences has become of interest to both earchers and those who supervise research projects. ever, Haigh and Jones (2005) note that nurses have n slow to realize the potential of such research, possibly due to unfamiliarity with the attendant ethical issues. Consequently, they present an overview of the ethical implications for researchers (and their supervisors, particularly nurse educators) ‘‘in cyberspace’’ and present their ideas for further debate; suggesting that issues surrounding consent, privacy, identification verification and disguise are particularly problematic within Internet research. However, as those authors acknowledged, they were largely extrapolating existing guidance to this ‘‘new’’ domain; a common practice, not without drawbacks (Eynon et al., 2008). Sixsmith and Murray (2001), drawing on their own experience of running an Internet research project, suggest that there are particular problems for researchers to consider regarding the ethical conduct of Internet based health research that are complex and not always amenable to ‘‘straightforward answers’’ (p. 429). Consequently, Flicker et al. (2004) call for ongoing dialogue and debate as to ethical conduct of Internet research; a call echoed by Whitehead (2007). Holmes (2009) concludes that ‘‘ethical standards for Internet research are not yet well-developed’’ (p. 399). It would seem apposite, therefore, to present further consideration of the subject based upon our experience as nurses of conducting an Internet based health research project. Our reflections here arise from a general sense of sympathy and agreement with the above authors’ arguments, and are offered in the spirit of the called for ongoing dialogue; supplementing, rather than supplanting being the aim. The experience from which we derive these reflections comes from having developed and conducted a qualitative project in the area of Child and Adolescent Mental Health (CAMH) as graduate student (SB) and supervisor (BC); accessing and discursively investigating (discourse analysis/ narrative inquiry) accounts of personal mental health experiences to be found freely available and archived at ‘Google Groups’ (https://groups.google.com), focusing particularly on accounts of self-injury/suicide, voluntarily posted by young people to Internet newsgroup forums held on the ‘Google Groups’ archive and comparing/ contrasting them with the existing academic/professional T I C L E I N F O

Discouraging Bullying: The Role of Ethical Leadership and its Effects on the Work Environment

Bullying is one of the most impactful deviant actions that affects workers’ personal health and work experience. Bullying is a quite distinctive deviant behavior as targets are subjected to transgressions that could last for months or longer. Even though a number of actions can be taken to resolve bullying between all parties, from the viewpoint of the target it is hard to resolve the situation. As a result, hierarchical influence may be necessary to prevent bullying in the first place. A possible solution, therefore, is focusing on how leaders can impact the bullying behavior. This research argued and showed that ethical leadership is negatively associated with being bullied through tackling one of its most important antecedents of bullying: the design of the work environment. That is, ethical leaders could be shown to improve employees’ workload (quantitative work environment) and poor working conditions (qualitative work environment), which was related to decreased bullying.

Finding a Balance

We investigated how mothers employed in support staff positions make personal and family health decisions. We used a critical feminist grounded theory design. Twenty women employed at a large Canadian institution participated over two years in repeat interactive interviews. "Finding a balance" was the emergent core process of health decision making in response to the basic social problem of multiple demands and uncoordinated, sometimes conflicting ideologies. Women emphasized recursive movement within a continuous process of four action phases: cueing in, figuring out, generating solutions, and assessing results. Two distinct views of finding a balance were revealed: weighing competing interests or harmonizing multiple interests. These distinctive views contributed to variation in women's approaches to decision making and to their personal and family health experiences. Women's experiences suggest a capacity for reflective practice in health decision making that provides an excellent basis for holistic, emancipatory nursing practice.

Older Adults Are Less Likely to Identify Depression Without Sadness

Many older adults do not identify depression or the need for professional treatment. Late-life depression frequently occurs without dysphoria (i.e., depressed mood or sadness); in such cases, older adults may have particular difficulty identifying depression, leading to poor health outcomes. The aims were to examine the hypotheses that older adults would be more likely to identify depression and need for professional help in a vignette of a depressed older adult with sadness versus without sadness. In a randomized experiment, 244 community-dwelling older adults (60+) read one of two vignettes and answered questions about their perceptions of the problem, solutions, and their own background. Less than half (40.98%) identified the person as depressed (sad vignette: 48.33%; vignette without sadness: 33.87%). Participants were more likely to identify depression if they had personal mental health experience, more positive expectations regarding aging, and read the sad vignette. They were more likely to recommend professional help if they identified depression. Older adults’ identification of depression and need for professional help remain low, particularly in the absence of dysphoria.

Everyday health and the internet: a mediated health perspective on health information seeking

This paper explores the relationship between internet use and individuals' health experience. Adopting a 'mediated health' approach, it presents four cases studies of households using the internet for health information. The study shows that participants use the internet as it offers personalized information in line with individuals' and families' health needs affecting their everyday routines. The internet emerges as an everyday helper linked to the intimacy of health experiences. Agency is manifest in study participants' choice of both becoming more informed as well as having the possibility of ignoring information. Case studies also show how personal internet use is confronted by informational surroundings generating flows of information that may induce uncertainty on the information seeker's side. The paper calls for a perspective which considers together personal health experience and media use to embed online health information seeking within an everyday context of internet use.

How patients’ experiences contribute to decision making: illustrations from DIPEx (personal experiences of health and illness)

To describe how people use their and other people's experiences ('experiential evidence') in making health care decisions. People faced with health decisions may employ not only clinical evidence and advice, but also their own previous experiences and the experiences of others who have faced similar decisions. Professionals have taken little notice of people's use of such experiential evidence and its importance in practice; acknowledging it would improve communication with patients. The data come from the DIPEx (personal experiences of health and illness) project, which involves rigorous analysis of narrative interviews of people with particular conditions, chosen to represent the widest practicable range of experiences of each condition. Each collection consists of 40-50 interviews. The analyses of people's experiences are summarized for patients and professionals on a website (http://www.dipex.org) and illustrated by clips (video, audio or written) from the interviews. We draw on the qualitative research conducted for DIPEx to consider some of the different ways that people integrate experiential information when they face decisions about antenatal screening, childhood immunization and treatment for cancer. Other patients' experiences are an important part of the evidence that people use when making decisions about health care. People are naturally drawn to other people's stories, which add salience to medical information and make facts palatable and memorable. Patients' experiences are not an alternative to the evidence base - they are part of it; to dismiss them as 'anecdotes' is a serious misunderstanding. There are established methods, grounded in social science traditions, which can be used to research and report patients' experiences. Health professionals, as well as patients, need to consider and value this experiential evidence. Managers and clinicians can help patients by guiding them to information resources, such as DIPEx, that present evidence-based health information through patients' experiences.

The Ecology of Environmental Health

The Ecology of Environmental Health

'One patient amongst many': a qualitative analysis of intensive care unit patients' experiences of transferring to the general ward

IntroductionMany patients experience 'relocation stress' when they are transferred from an intensive care unit (ICU) to step-down (high dependency) or general ward care, and much has been written about the psychological causes. This qualitative analysis of in-depth, narrative interviews with former ICU patients explores and examines patients' accounts in order to identify additional causes of relocation stress.MethodsForty former ICU patients were recruited throughout the UK, using maximum variation sampling, to achieve a broad range of experiences of intensive care. Interviews in people's homes were recorded on video and audio equipment as part of a study for the Database of Personal Experiences of Health and Illness (DIPEx) web resource. All interviews were transcribed, checked and returned to respondents. For this report, a qualitative thematic analysis was used to explore experiences of transfer.ResultsWe found that most people experienced relocation distress not only because of physical and emotional difficulties relating to their illness and treatment and the inevitable anxiety resulting from leaving a protected environment, but also from concrete, practical causes. These included specific concerns about communication, feeding, nursing care and support, as well as ward organization and environment. Written excerpts from the interviews and two video excerpts taken from the DIPEx website illustrate our findings.ConclusionWe conclude that there are several aspects of care that deserve further examination by researchers and service providers, and that not all of the factors associated with relocation stress should be seen as an inevitable consequence of the psychological adjustment involved in transfer from an ICU.

Using Complementary and Alternative Medicine Curricular Elements to Foster Medical Student Self-Awareness

To determine the value that the National Center for Complementary and Alternative Medicine (NCCAM)-funded Education Project leaders placed on self-awareness objectives among their curricular activities, to identify projects' rationales for inclusion of self-awareness activities, and to describe curricular elements used to teach self-awareness. A survey was distributed to the NCCAM Education Project grantees in October 2006. Survey items sought to identify project directors' perceived importance of self-awareness activities in complementary and alternative medicine (CAM) curricula, rationales for inclusion of self-awareness activities, and activities to foster self-awareness. Invited reports described in more depth the specific activities in three of the projects. Fourteen of 15 reporting NCCAM educational projects rated activities to promote self-awareness as highly or very highly valued components, and all projects incorporated numerous strategies to enhance self-awareness. Learning objectives ranged from basic knowledge about mind-body relationships and psychoneuroimmunology, to evidence and indications for mind-body interventions, to training in self-application, to training for intervention with patients. Specific strategies that increase students' self-awareness included evidence-based CAM activities to help students recognize personal biases that may impair critical thinking; personal health experiences to expand definition of health beliefs; and mind-body medicine skills groups to personally integrate the use of mind-body techniques for wellness and stress management. Incorporating some of these CAM curricular activities, didactically or experientially, may be a unique way to foster student self-awareness and personal growth.

Using Clinical Experience in Discussion within Problem-Based Learning Groups

A key principle in problem-based learning (PBL) is the student linking learning from different sources to enrich understanding. We have explored how medical students based in a clinical environment use clinical experience within PBL groups. We recorded the discussion of 12 third-year groups, which were meeting for the second time on a PBL case, where students report back on the learning objectives. Discussions covering five separate PBL paper cases were recorded. Analysis of the transcripts was based on constant comparative method using a coding framework. The range of discussion segments of clinical experience was 2-15, with 9 of 12 groups having at least five separate segments. Our initial coding framework covered 10 categories, of which the most common were: a specific patient encounter (19%); an experience in the community (15%); and a personal health experience (15%). Students often used emotive phrases with 37 examples in the clinical experience segments compared with 9 from the longer non-clinical discussion. Most clinical descriptions triggered further discussion with almost half leading to some related medical topic. The discussion segments were subsequently coded into; 'confirming' (40); 'extending' (40); and 'disconfirming' (16) the understanding of the group for that topic. Discussion of clinical experience encouraged students to connect to the affective aspects of learning. It helped students to bridge between the tutorial and real clinical contexts. A clinical experience was often a powerful pivotal point, which confirmed, extended or refuted what was being discussed.

DIPEx personal experiences of health and illness

DIPEx personal experiences of health and illness

The choice is yours? How women with ovarian cancer make sense of treatment choices

Objective Much has been made of the need for cancer patients to be involved in choices about their treatments. We explore the different approaches to involvement described by women with ovarian cancer and consider why being invited to make a choice can sometimes seem inappropriate and untimely. Method Qualitative interviews were conducted in the UK with women with ovarian cancer. Interviews were audio tape recorded and transcribed for qualitative analysis. The interviews were collected as part of a broader study of experiences of ovarian cancer as part of the DIPEx (personal experiences of health and illness) project which runs a website http://www.dipex.org featuring further analyses and video and audio clips from the interviews. Results Women did not always recall being involved in decisions —some felt there had been no ‘real’ decisions to make or said they preferred their medical team to decide on their behalf. Other women described asking questions and seeking second opinions but still ‘going along with’ their doctor's recommendation. A few women (including some of those who had felt unable to participate in decisions soon after their diagnosis) said that they had learnt enough to take control or make at least some of their own treatment decisions. The manner in which options were offered to women sometimes led to confusion and concern, especially if women felt the doctor was unwilling to express his or her own preference. Some worried that not accepting the doctor's advice would prejudice their future care. Conclusion Patients and doctors are often uncertain how best to share in decisions about treatments. Being asked about their preferences can surprise or shock women. Clinicians need to explain about clinical uncertainty and how individual values and preferences may relate to treatment decisions. Presenting the rationale for choice can be difficult and even when well presented, women can be left feeling ill prepared, panicky and trying to second guess what they think the doctor ‘really’ wanted them to do. Practice Implications When patients are invited to make choices their clinicians need to explain about clinical uncertainty and how individual values and preferences may relate to treatment decisions. The options should be communicated in a clear manner, differences in opinion should be acknowledged and the doctor's own preference stated. Patients need to be encouraged and supported to make their decision—whether or not it reflects their doctor's preference. Patients should also be reassured that whichever decision they make their subsequent care and relationship with their medical team will not be adversely affected.

Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness)

This paper outlines an approach to analysing qualitative textual data from interviews and discusses how to ensure analytic procedures are appropriately rigorous. Qualitative data analysis should begin at an early stage in data collection and be highly systematic. It is important to identify issues that emerge during the data collection and analysis as well as those that the researcher may have anticipated (from reading or experience). Analysis is very time-consuming, but careful sampling, the collection of rich material and analytic depth mean that a relatively small number of cases can generate insights that apply well beyond the confines of the study. One particular approach to thematic analysis is introduced with examples from the DIPEx (personal experiences of health and illness) project, which collects video- and audio-taped interviews that are freely accessible through http://www.dipex.org. Qualitative analysis of patients' perspectives of illness can illuminate numerous issues that are important for medical education, some of which are unlikely to arise in the clinical encounter. Qualitative studies can also cover a much broader range of experiences - of both common and rare disease - than clinicians will see in practice. The DIPEx website is based on qualitative analysis of collections of interviews, illustrated with hundreds of video and audio clips, and is an innovative resource for medical education.

Interprofessional collaboration with service users in the development of cancer services: The Cancer Partnership Project

Patient and Public Involvement (PPI) is a cornerstone of UK National Health Service (NHS) policy. The Cancer Partnership Project (CPP) is the leading national PPI initiative in cancer care. The CPP espouses a “partnership” model, with a “Partnership Group” – collaborative service improvement groups formed of NHS staff and service users – in each of 34 cancer networks in England. These groups aim to enable service users to influence local cancer service development and thereby improve the effectiveness of services. We interviewed 59 cancer service users and NHS staff in a reflective evaluation of CPP. Groups were active and visible in 30 networks, their main activities being: providing an accessible source of consumer opinion; prolific networking and representation; patient information and communication projects; and lobbying for service improvements. The groups exhibited some significant tensions. The motivations of professional staff varied markedly, and “obligatory” involvement as part of a person's job was counter-productive when not coupled with a “personal” belief in the value of PPI. Other controversial areas were the disclosure by patients' of personal health and treatment experiences, and emotional attachment to the group. It was concluded that partnership groups represent a useful PPI model, but more attention generally should be paid to the complexities of PPI and timescales required for meaningful cultural change.

Many people with epilepsy want to know more: a qualitative study

To explore why, at the turn of the 21st century, many people with epilepsy still want more information. Qualitative study with a maximum variation sample in the UK. We interviewed 38 men and women, 35 with epilepsy and three carers of people with epilepsy, recruited through GPs, neurologists, support groups and charities. People with epilepsy obtained information via health professionals, epilepsy organisations, leaflets, books, and the Internet. Many people wanted much more information about treatment options. People wanted to discuss the advantages and disadvantages of different drugs with their consultants, who were sometimes too busy. People also wanted to know more about the causes of epilepsy, partly because they feared the stigma associated with it, and other matters, such as Sudden Unexpected Death in Epilepsy [SUDEP]. The UK government plans to provide better services for those with epilepsy but, without enough money to employ more specialists, the information needs of patients may not be met. For concordance to work effectively doctors need to be aware of what patients think about their drugs, and patients need more information about treatment options. They also need more time to discuss the causes of epilepsy in order to reduce stigma and fear. Since time in consultations is short, clinicians should inform patients about epilepsy organisations, and direct them to websites such as the DIPEx (Personal Experiences of Health and Illness) epilepsy website (www.dipex.org/epilepsy), which focuses on patients' experiences of epilepsy and provides reliable information about medicines, other treatments, and resources.

Genetic Literacy and Citizenship: Possibilities for Deliberative Democratic Policymaking in Science and Medicine

Genetic Literacy and Citizenship:Possibilities for Deliberative Democratic Policymaking in Science and Medicine Bruce Jennings (bio) The Human Genome Project and related genetic research have moved human biology and medicine to a new level. We now can identify genes (sections of the huge DNA molecule found curled in the nucleus of each cell of the body) associated with biochemical abnormalities that are in turn linked to symptomatic disease, dysfunction, and perhaps tendencies toward certain forms of behavior.1 The mapping and sequencing of the human genome has already begun to transform the practice of medicine, and it promises to improve the health of individuals and societies around the world. It also threatens to create new forms of discrimination and domination both on a global level and within particular societies, including the United States. Genetic science—and the technologies it spawns—are increasingly important forms of power and domains of public policy.2 To be cut off from knowledge and information about the new genetics, and to be voiceless in the development of goals and regulations governing its use, is to be doubly disenfranchised. It is to be disenfranchised both in the political system in one's role as a democratic citizen, and in the health care system in one's role as a consumer of health care and a decisionmaker and partner in the physician-patient relationship. This situation poses daunting challenges in America. Despite our enormous wealth, we have a highly stratified and unequal society.3 Despite our ethnic and cultural diversity, we continue to wrestle with racism and intolerance. Access to and utilization of the health care system is sporadic and limited for more than 50 million Americans. Furthermore, despite the remarkable achievements of our technical elites, we do a poor job overall in the area of basic science and health education. With the possible exception of computers, no area of science has received as much general publicity in the last ten years as genetics. So some level of familiarity with the subject is widespread; but most research has shown that understanding is limited to broad generalizations and images, and to be concentrated, when it exists at all, on particular diseases or disorders in one's own personal or family health experience.4 Critical Literacy The challenges posed by the new genetics and biotechnology cannot be met without a greater investment in, and emphasis on, that aspect of broad health literacy that might be called "genetic literacy" and "genetic citizenship."5 These terms of art carry a special meaning. Literacy literally refers to the ability to read, and difficulty with reading and other linguistic barriers obviously hamper one's access to the information and understanding necessary for effective health decisions and health care. But just as the problem is broader than this, so too the concept of literacy involves more than the provision of information. Literacy, more broadly defined, means both the ability to understand one's needs and interests and the power to act to protect and promote those needs and interests. This is true of health literacy generally and for genetic literacy in particular. To be sure, our society is rapidly becoming increasingly demanding in the way it requires individuals to master specialized information and complex technical knowledge. Yet the acquisition of skills is a necessary but not a sufficient condition of genetic literacy. With genetic literacy, it does little good to equip people with functional skills in an unjust or coercive social milieu that makes it difficult to turn those skills into effective capacities and to engage in action that will promote and protect their health and other interests. Hence, the critical function of the concept of literacy is not to identify flaws or shortcomings of particular individuals or of particular communities. Individuals and communities that currently lack effective literacy seek access to the skills and information necessary and will attain them if given an opportunity to do so. The critical function of the notion of genetic literacy is to focus on the context or the environment within which individuals and communities share information about genetics, try to understand the meaning of that information in their lives, and deliberate and debate with others how the...

The craft of teaching qualitative research: linking methodology to practice

Qualitative inquiry provides a means of apprehending the personal and contextual experiences of health and health care as well as the complex social, cultural and political issues that influence services and professional practice. Despite its usefulness in informing clinical practice, it is undervalued and under-utilised in contemporary nursing research. A number of organisational, ideological and educational reasons exist for this situation. This paper addresses educational issues, specifically teaching practice. We discuss craft knowledge, an important but often obscured practice, and its use in qualitative research education, drawing on the findings of a project that investigated a group of nursing academics' experiences and perceptions about teaching qualitative research. We argue that craft knowledge offers teachers a means to inspire and engage clinician students to learn not only the content and research skills required to do good qualitative research but to learn more about the standpoint and sensibilities of being qualitative researchers. In this way craft knowledge does two things. First it helps to move beyond the content versus process polemic that often dominates educational debate. Second, by enhancing the quality of educational experience, it potentially helps clinicians to value qualitative inquiry and thus defend and use it to inform clinical practice.

Petitions, Public Opinion and Hospital Restructuring in Kitchener-Waterloo

A survey was collected in 1996–97 in which, early in the petition-gathering process by the Save Our Hospital Campaign to prevent the closing of St. Mary's Hospital in Kitchener, Ontario, known petition signers and a general cross-section of the public were sampled. The survey data demonstrated that signers of the “Save St. Mary's” petition did indeed have strong views about local health issues. The general public and the petition signers were differentiated not so much by personal health experiences or amount of contact with hospitals as by general concern among petitioners about the erosion of health care together with a conviction that the public should have a strong voice in health care decision making.

Medical students as patients

The personal health experiences of medical students may contribute in important but previously unacknowledged ways to their well-being and education. This pilot study surveyed medical students about their health care needs, practices, insurance status, and concerns about seeking care. A questionnaire was developed and distributed to 151 students at the University of New Mexico School of Medicine in 1993-94. Participant privacy was protected. Responses were compiled and analyzed using logistic regression models and odds ratios. A total of 112 students responded. Most reported health care needs and half routinely received care at their training institution. One-third had informally requested prescriptions or diagnostic tests from medical school faculty and housestaff; one-fourth used such informal consultation as their "usual" method of obtaining care. Eighteen students were uninsured. The students reported that they had not sought care for several reasons, and many had experienced difficulty in obtaining care. The students indicated concern about confidentiality and about the dual role as both student and patient at the training institution. They believed that their academic standing would be jeopardized if they developed certain health problems. When asked about hypothetical scenarios, a majority preferred to avoid the dual role of medical-student-patient. When asked about scenarios in which medical student peers exhibited suicidal depression or severe drug abuse, the students overwhelmingly preferred not to notify the medical school administration. Significant differences in responses were found with respect to gender and training level. This pilot study examined the health care needs, practices (including the use of informal consultation), insurance status, and concerns of students at one medical school. The findings highlight the students' perceptions of illness and vulnerability during medical school training. Constructive implications for academic medicine are discussed regarding initiatives in the areas of policy, research, and the resources and structure of student health care services.

Employee perceptions of workplace health and safety issues. Can a questionnaire contribute to health needs assessment?

A questionnaire survey was conducted to determine attitudes and perceptions of employees of a Scottish local authority of the role of occupational health services. Questions were included covering the following areas: influences on health, the effect of the workplace on health, satisfaction with work and working conditions, the role of occupational health services, and personal health experience. Most of the survey respondents believed that the prime function of an occupational health service is to ensure a safe working environment. However, it was indicated that management has responsibility for employee welfare at work and that an appropriate management structure to address safety issues should be accessible. In addition, employees would like the occupational health service to provide some health promotional activities, particularly stress management courses and the opportunity for exercise.