Reasons for use and disclosure of complementary medicine by people with haemoglobinopathy

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Georgiou, Helen (2006) Reasons for use and disclosure of complementary medicine by people with haemoglobinopathy. PhD thesis, Victoria University.


An increasing number of people with chronic illness use complementary and alternative medicine (CAM) (Metz, 2000) and rarely disclose such use to treating biomedical physicians [B/M] (Adler & Fosket, 1999). Although the incidence of CAM use amongst people with chronic illness has been investigated (Nader et al., 2000; Sharon & Mark, 2006; Yang et al., 2002) research specifically examining that section of people who require ongoing biomedical treatment from a very early age until death has never before been conducted. This thesis examined the patterns of self-prescribed and CAM practitioner prescribed CAM use, reasons for CAM use and disclosure of CAM use to treating physicians, among people with a lifelong medical condition, thalassaemia major (TM). To examine the reasons for use and disclosure of CAM in this population, 21 people (eight males, 13 females) aged between 24 and 43 years volunteered for the three-phase study, which forms the thesis. The participants were English speakers whose physical and cognitive capacities did not prevent participation in the study. Interviews were conducted in the participants’ homes and followed standard consent procedures. All phases were conducted face-to-face. In Phase 1, using an in-depth unstructured questionnaire and two structured questions, participants were asked about their medical history, CAM use and whether they disclosed such use to their biomedical physician/s. In addition, the participants were asked to nominate any CAM practices they had heard of, that people might use. A written list was devised as the participants mentioned CAM therapies/treatments. The participants were then asked which of these CAM therapies/treatments they had used. In Phase 1, all of the participants reported having multiple co-morbidities and at least one major surgical procedure. Twelve of the participants reported using CAM when asked a dichotomous choice question. All participants were found to be CAM users when CAM was estimated according to the substances and therapies that participants reported using. Phase 1 showed that CAM estimates varied according to which CAM definition was applied to analyse the data. In Phase 1 there was only one participant out of 21 (4.76%) who reported CAM disclosure and disclosure was ongoing in that case. The reasons for CAM use and disclosure were elicited using in-depth conversational interviews, which constituted Phases 2 and 3 respectively. The operational definition of CAM devised for this thesis was based on the intent of CAM use and not prescribed by a biomedical physician. Based on the operational definition of CAM proposed for thesis there were 21 CAM users. Examination of the reasons the participants gave for CAM use confirmed there were 21 CAM users. Phase 2 showed the participants wanted safe and effective treatment to manage and cure the primary illness and co-morbidities. Phase 2 also indicated that CAM was used, at times in lieu of biomedicine, to prevent illnesses and to enhance quality of life (QoL) and to increase life expectancy. Phase 2 showed biomedical failure and adverse outcomes from biomedicine motivated CAM use. These reasons shaped perceptions of dissatisfaction with biomedical treatment and the prescribers of such treatment. Phase 3, addressed CAM disclosure, showed most of the participants considered they had disclosed their CAM use when they asked their treating biomedical physician about CAM. Phase 3 demonstrated most participants attempted to disclose CAM use and whilst they felt it was important for the treating physician to know about such use, they abandoned disclosure because of dissatisfaction with biomedical practitioners’ responses to their attempts to disclose. Other reasons for non-disclosure or aborted disclosure included a desire to maintain privacy and a belief that CAM was harmless. Phases 2 and 3 showed core reasons for CAM use and CAM non-disclosure were dissatisfaction and a loss of confidence in biomedicine. The one person who did disclose CAM use stated disclosure symbolised their dissatisfaction with biomedicine. This thesis showed people with a serious life-long illness used CAM because biomedicine was often ineffective, frequently palliative and sometimes considered deleterious to health. These aspects of biomedical care instigated dissatisfaction and a loss of confidence in biomedicine treatment and practitioners. The negative perceptions held by the participants of biomedical treatment and biomedical physicians were the primary motivators for CAM use and disclosure. All participants were found to be CAM users and this might have serious implications for their on-going biomedical treatment because some CAM products have a pharmacological effect that might interact with prescribed biomedicine medication. The findings suggest CAM was beneficial in an environment in which biomedicine could only offer palliative care, but this finding requires further research. This thesis showed that CAM use and disclosure are complex issues, deserving indepth examination in people with a range of medical conditions, as well as in the general population.

Item type Thesis (PhD thesis)
Subjects Historical > RFCD Classification > 320000 Medical and Health Sciences
Historical > Faculty/School/Research Centre/Department > School of Nursing and Midwifery
Keywords complementary medicine, alternative medicine, thalassaemia major, haemoglobinopathy
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