JRSM >
Volume 96, Number 5 >
Pp. 209-210
Correspondence to: Dr A Herxheimer, 9 Park Crescent, London N3 2NL, UK E-mail: info{at}dipex.org Website: [http://www.dipex.org]
The Database of Personal Experiences of Health and Illness (DIPEx) launched its website in July 2001. The first two collections (modules) dealt with hypertension and prostate cancer. Now four more modules on other common cancers have been added—breast, bowel, testis and cervix—and work on seven new modules is going on.1 This is a good time to look at what is emerging. The primary aim of DIPEx is to describe the widest practicable range of individual experiences from the patients' points of view and to provide a rich information resource for patients affected by the diseases and for those who look after them. DIPEx inquiries use qualitative methods whereby patients are encouraged to talk without interruption about all aspects of their experiences that mattered to them.
Four general messages emerge from the work so far. First, many people still do not know how to find the information they need when they face a new diagnosis or dilemma. That applies even to common diseases such as breast cancer that are endlessly written and talked about and for which information resources and self-help groups abound. As professionals we are not very good at guiding people at an early stage of their disease to sources that relate to their personal needs and preferences. Other people's recorded experiences offer a path that takes account of these.
Secondly, there are difficult aspects of disease that doctors recognize are important but find too uncomfortable to discuss, such as incontinence, stigmatization, sex, and how to tell children when a parent is seriously ill. People who have had cancer describe how sexual difficulties were ducked and how they struggled to maintain their previous persona.2 For example, although bowel cancer is often described as an ‘embarrassing’ illness, our interviews suggest that the word is inadequate for the utter humiliation and loss of adult identity experienced by many patients when they lose bowel control. Professionals who do not understand this are in danger of sounding glib and out of touch when they give advice. Stories of how people had (or had not) told their children about their disease help others to decide what to do themselves. We would have found it hard to imagine how a mother could tell her four-year-old son that she had bowel cancer.
Thirdly, positive accounts of experiences with the National Health Service service were reassuring at a time when weaknesses in the delivery of healthcare were receiving widespread media coverage. For example, the parents of children with congenital heart disease expressed enthusiastic admiration for the services and the way their predicament was handled, untarnished by the reports on Bristol and Alder Hey. This was a welcome surprise in view of the chronic stream of criticisms of the NHS suggesting that the whole system is dysfunctional and ready to collapse. In some cases an abnormality had been detected during pregnancy, in others it had not been predicted. Whatever the story, parents extolled the sympathetic attention and explanation they received; and when surgery had been needed, particular appreciation was reported for the support available from the cardiac liaison nurse, who could be reached at any time. Parents said that they were never made to feel their request for advice was unnecessary and that the response was always prompt and appropriate. Admiration for the intensive therapy unit was also universal, including the value of the anticipatory visit which was always offered, the constant individual care (one nurse per patient) and the impressively advanced technology of the apparatus used. Open-heart surgery was being performed in tertiary hospitals and in many cases these were quite far from the family's home, with the resulting potential for expense and domestic disruption. Again there was evidence of thoughtful provision both of funds for journeys (in one instance visits to outpatients entailed a plane journey), and in some places accommodation for the parents and other children if required, with beepers so that they could quickly be called to their baby's bedside.
Fourthly, patients telling their story have a sense of altruism and solidarity with others, analogous to giving blood. We have been struck by how they feel more part of the community in sharing their story; some may even gain greater self-understanding and self-esteem. Many participants have become enthusiastic about DIPEx and feel a bond with it.
From the start, we were concerned that a long and detailed interview might upset some patients. Reliving unresolved problems and experiences can be painful; public exposure of private reflections might cause harm. This cannot be entirely prevented, but the risk is lessened by employing only experienced qualitative researchers skilled in handling sensitive issues. In a narrative interview the respondent controls its structure, length and content, and intrusive questions are avoided. To guard against publication on the website of material that might cause embarrassment we are careful about our consent and copyright procedures. Participants sign a consent form before the interview but are not asked to sign a copyright form until later. They receive a copy of the transcript and are free to withdraw the interview, limit the selections to anonymous written or audio clips, or identify sections to be withheld. To date about 10% of participants have chosen to remove part of their interview: very few have withdrawn the full interview. Researchers are categorizing the removed sections (e.g. personal detail about self or family; pejorative comment about health professional); we will then know what types of information people withdraw.
Finally, some specific points will need to be analysed and published in detail. One concerns what people do with their medicines and why. The beliefs, understanding and routines only become clear when patients feel free to talk about the medicines—and anything else that is important to them—in a non-clinical setting, with an experienced social science researcher, and without interruption for as long as they want. What emerges is more complicated and more interesting than ‘compliance’ seen mechanistically, or even than ‘concordance’. For example, many people with hypertension chose for various reasons not to take their tablets at least part of the time. Some, among them a doctor, ‘forgot’ because they did not want to be reminded there was something wrong. Others felt that the side-effects of the medication were greater than could be justified by the risk they would run if they did not take them. One man reasoned that, since so many people with hypertension were not being treated, if he left off his tablets he would be no different from them.
A major theme in the prostate cancer stories is that ‘hormone drugs attack a man in every department where he feels he is a man’—impotence, labile mood, lack of energy, inability to work. Patients may not be warned about these possible effects, and by the time they have had the treatment it is too late.3 This contrasts with the experience of men with testicular cancer, who seldom reported feeling less masculine after treatment. Most could resume normal life including sexual activity. An unexpected discovery, which may help in consultations, concerned the way they used jokes. Many who had lost a testicle initiated jokes to manage feelings, to hide embarrassment, to reduce tension, to share a sense of solidarity with others, or to encourage others to examine themselves.4 Men also describe their reaction to jokes made by others, which was usually positive; jokes helped to dispel tension and reassure men that they were being treated as normal. Exceptions were men born with only one testicle who then developed cancer, those who had lost both testicles, and a man who could not ejaculate. These men were sometimes upset about jokes made by others, or by the idea of jokes being made, fearing humiliation, stigma and prejudice. We were surprised to learn that the subject of a prosthesis was not always discussed before an orchidectomy was done (Chapple A, McPherson A, unpublished). The pros and cons of a testicular prosthesis need discussion before surgery, not as an unplanned opportunistic extra later, requiring another operation.
We found that men with prostate cancer felt strongly that healthy men should be screened by prostate specific antigen testing, despite the false-positives and the fact that earlier diagnosis has not been shown to lead to more effective treatment. They believed that early diagnosis would reduce mortality, improve quality of life and save the NHS money. They argued that testing should be available because (a) symptoms can be ambiguous, (b) screening is seen as responsible health behaviour and would encourage men to look after their health, and (c) there is equivalent screening for women's cancers.5 A related finding was that many men for whom ‘watchful waiting’ would have been an appropriate option would not contemplate it, and indeed few of those who might have chosen it remembered any mention of it.6
The rich qualitative data behind every DIPEx module have convinced the team that building the website is not enough, and papers must be written to report many of the findings to all who communicate and deal with patients. We hope that these will influence how doctors and other health workers listen to patients and interact with them.
Acknowledgments
We are grateful to our colleagues for their help with this article.
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