Understanding unexpected courses of multiple sclerosis among patients using complementary and alternative medicine: A travel from recipient to explorer

Abstract

Complementary and alternative medicine (CAM) is frequently used by patients with multiple sclerosis (MS). Some MS patients experience unexpected improvements of symptoms, which they relate to their use of CAM. The aim of this study was to obtain knowledge and develop understandings of such self-defined unexpected improvement of MS symptoms. Two cases were constructed based on documents and 12 qualitative interviews. Our aim was not to make generalisations from the cases, but to transfer knowledge as working hypotheses. We identified four health-related change processes: the process of losing bodily competence; the process of developing responsibility; the process of taking control; and the process of choosing CAM. The patients explained unexpected improvements in their MS symptoms as results of their own efforts including their choice and use of CAM. In our theoretical interpretations, we found the patients’ redefinition of history, the concept of treatment and the importance of conventional health care to be essential, and leading to a change of patients’ position towards conventional health care from recipients to explorers. The explorers can be perceived as boundary walkers reflecting limitations within the conventional health care system and as initiators regarding what MS patients find useful in CAM.

The Path to Self-Management: A Qualitative Study Involving Older People with Multiple Sclerosis

“…Although the passage of time is clearly an important component in the process of accepting and integrating MS into a sense of self, 15,22 seeking out health-promoting activities and treatments and learning from ''mistakes'' also seem to have been important methods for our participants to take control of managing their disease. 26 Since early lifestyle choices, such as smoking, 27 and comorbid conditions such as cardiovascular disease 28 are associated with more rapid progression of MSrelated disability, earlier implementation of wellness strategies could influence the long-term health and quality of life in people with MS. Self-management programmes, for example, may have the potential to shorten the decades-long process of obtaining competence in self-management to months or years (see Figure 1). Our findings suggest, however, that participants did not experience clear distinctions between the phases of denial, acceptance, and integration, which makes it difficult to determine either when a self-management phase begins naturally or when self-management programmes should be implemented.…”

Modes of Embodiment in Breast Cancer Patients Using Complementary and Alternative Medicine

“…The modern health care users can be perceived as active managers and explorers of therapeutic 31 options rather than passive recipients of expertise. They search for knowledge that is meaningful in their everyday life with their disease, and often share "the alternative paradigm" (Salamonsen et al, 2010;Boon et al, 1999;Broom 2009a;Launsø & Rieper, 2006;Thorne, Paterson & Russell, 2003). Prior (2003) has discussed the phenomenon of "the knowledgeable patient" and the limits of lay versus medical knowledge.…”

“…Patients using CM or AT can be perceived as resisting consumers (Fox & Ward, 2006) and boundary walkers, walking the boundaries between various treatment systems (Salamonsen et al, 2010, Broom 2009a.…”

“…Patients who choose to use CAM often base their treatment choices on personal experiences and lay knowledge of significant others (Salamonsen et al, 2010;Boon et al, 1999; Broome, 2009a;Thorne, Paterson & Russell, 2003). CAM users are often perceived as non-compliant patients who demand attention from, and change in, the conventional health care system to safeguard and optimize their treatment choices (Salamonsen et al, 2010;Bodeker, Kronenberg & Burford, 2007).…”

“…Patients who choose to use CAM often base their treatment choices on personal experiences and lay knowledge of significant others (Salamonsen et al, 2010;Boon et al, 1999; Broome, 2009a;Thorne, Paterson & Russell, 2003). CAM users are often perceived as non-compliant patients who demand attention from, and change in, the conventional health care system to safeguard and optimize their treatment choices (Salamonsen et al, 2010;Bodeker, Kronenberg & Burford, 2007).One important and so far almost unexplored aspect of cancer patients" complex use of CAM is the meaning and importance of bodily experiences. Relevant studies among patients with various diseases indicate that focus on bodily awareness, bodily experiences and embodied knowledge are important elements in experienced effects of, and reasons for, the use of CAM (Agdal, 2005;Baarts & Pedersen, 2009;Broom 2009a; O" Connor, 2003;Paterson, Baarts, Launsø, & Verhoef, 2009).…”