The Meaning of Skin Disease: the Importance of Qualitative Research

Abstract

Skin disease has meanings, which derive from social & cultural understandings, which are of course informed in the contemporary world by scientific & professional research & knowledge. But the latter do not by any means wholly determine popular beliefs and perceptions at the level of the general public, nor at the level of the individual who has such disease. These meanings are often longstanding, constantly reinforced & amplified, continuing & in force even in the face of calculated rational efforts to counter them. In consequence, behaviour rests upon preconceptions, beliefs and values, which can be at odds with the notions & goals underpinning professional therapeutic decisions for example, not uncommonly undermining them. Treatment itself is a challenge to understanding, with “meanings” to be determined & unravelled by the patient & the wider community alike. Nor should it be thought that medical & related concepts, knowledge & practise are insulated from wider cultural conceptions. The EDEN Network findings & others provide ample evidence that clinical decisions are influenced, even founded upon, considerations other than scientifically grounded evidence & support. They include “tradition”, custom & practice, personal preference, commercial/promotional influence, & political considerations & constraints. It is easy to make the mistake of ignoring such realities, failing to take lay, “folk” or “vernacular” understandings, concerns & behavioural practices seriously; & to dismiss them as simply irrelevant, or falsely founded & problematic, requiring no more than “correction”. Recent enthusiasm for cognitive & behavioural intervention as a component of treatment reflects in some measure a drive to secure patient “pacification”, & behavioural compliance with the specifics of a therapeutic regime, without any serious attempt to understand the complexity of the social “world” within which the patient operates & the justifiable broader goals & constraints which influence, even direct, him/her. “Chronicity” is a central feature of that experience & the enduring everyday reality which has to be addressed by the patient, his supporters, & those with whom he has wider social encounters. It should not be ignored by the professional who has been consulted. The meaning of skin disease in this wider sense is unlikely to be revealed by means of investigative instruments designed for, & more suited to, quantitative research. An approach akin to the natural observational, ethnographic, interpretive field research traditions of social anthropology and qualitative sociology is more likely to bring useful knowledge & understanding. We know, & give explicit recognition to, all too little of what people actually “do” & don't do, & the rationale for it, in relation to their disease & treatment. We have no sound basis in descriptive fact, nor much by way of a framework for understanding & interpretation of dermatological illness behaviour. Thus far the approach of Dermatologists to “disability, & their understanding of it, has lagged behind that of colleagues in other specialties. This has made their well-motivated efforts to deal with it individually & collectively less effective than they should & could have been. The evidence or “data” in enquiry designed to explore all this will be “soft” rather than “hard”, but deserve to be taken seriously nonetheless. Such a concern for uncovering meaning imbedded in culture & everyday social organization will inevitably too, shift at least some of the attentions of dermatologists away from sole & precise focus upon individuals, the skin itself as an organ, & diseases afflicting it, to encompass the meaning of dermatological disease & its management for the community and the wider public, as crucial to their professional concerns. It makes more likely & more genuinely effective moreover, the “conversation” with patients & their representatives, in striving for concordance in therapy at an individual level; & at a collective level, partnership in joint “political” activity directed towards countering prejudice & discrimination, securing appropriate resourcing, & improving quality of life, public health & the general well-being. If the everyday world of the individual with skin disease is seen & understood in a broader cultural & social context, then Clinical Dermatology could be reshaped to include at its heart genuine community engagement. The first step may be to recognise the value of qualitative research which could inform a more comprehensive & better understanding of the fact that there is more to skin disease than simply disease of the skin.