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Abstracts / European Journal of In

nvestigating patient experienced outcomes among peo-le with multiple sclerosis—Establishing an appropriateesearch design

. Skovgaard (MA, MA (Ed.), PhD-fellow) a,b,c,∗, M. Kris-ensen (BSc.san.publ.) a

The Danish Multiple Sclerosis Society, DenmarkDepartment of Public Health, University of Copenhagen,enmarkNAFKAM, University of Tromsø, Norway

Background: In recent years, members of The Danish MSociety have expressed an increasing wish for patient experi-nces to be collected and investigated. Therefore, the societyas initiated a large research project to take place from 2010 to013, aiming at meeting this request by researching the mem-ers’ experienced outcomes from use of conventional medicines well as complementary and alternative medicine (CAM) andhe combination of these in their everyday life. However, one ofhe major challenges in evaluating patient experienced outcomesmong People with Multiple Sclerosis (PwMS) is the complex-ty in the courses of disease and treatment [1,2]. Previous studiesave shown aspects of complexity to be of specific relevance inonnection to the use of CAM [3]. Therefore, the initial phase ofhe research project has focused on the core question: How canresearch design be constructed that embraces aspects of com-lexity when investigating patient experienced outcomes amongwMS?

Methods: A previous research project, conducted by Theanish MS Society, took place from 2004 to 2010. In the project,team of five health care providers and five practitioners of CAMere set up to work together in developing and offering indi-idual treatment and rehabilitation to 200 PwMS. The researchesults from this project pointed to the fact that the courses ofombined treatments were highly complex and process oriented,nd that both quantitative and qualitative methods were requiredn order to grasp the treatment results that were obtained onumerous levels and differed extensively from patient to patient2,4]. On the basis of these research experiences, a mixed meth-ds design has been developed [5], aiming at allowing the newesearch project to not only gain insight into a large numberf individual patient experienced outcomes, but also obtain-ng a deeper knowledge of important aspects influencing theeneration of these outcomes.

Preliminary findings: In the process of constructing an appro-riate research design, an internet-based questionnaire wasonstructed. Three sessions of cognitive interviews were per-ormed in order to gain insight into the chains of reasoningmong potential respondents. These sessions combined with

pilot study, including 400 respondents, contributed withmportant knowledge regarding the strengths and limits of theuestionnaire. Based on this knowledge, an interview guide waseveloped, aiming at complementing the questionnaire surveyegarding important aspects of the patient experienced out-

omes. A mixed methods design has thereby been developed,ombining a dynamic internet-based questionnaire and a qual-tative interview study. Being dynamic in the construction of

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uestions, the internet-based questionnaire meets many of thehallenges regarding the variety of treatment modalities used andhe individual character of the outcomes obtained. The qualita-ive interview study is developed on the basis of program theorynd aims at complementing the survey by providing knowledgebout the respondents’ perception of the mechanisms of actionnd thereby a deeper understanding of important contextual,ynergetic and process oriented elements within the courses ofreatment.

Discussion: The extent to which a health care interventionauses or facilitates positive outcomes is a key question inesearch and practice and it has been argued that the core ques-ion “what works?” should be rephrased in an extended form,what works, for whom, when, where, and why, and from whoseerspectives”? [1–3] In this connection, it is crucial for anyesearch project dealing with CAM that the frame of understand-ng – and thereby the research design applied – is constructedith the aim of accommodating this extended core question.

eferences

1] Salomonsen A, Launsø L, Kruse T, Elisabeth E, Sissel H. Understandingunexpected courses of multiple sclerosis among patients using complemen-tary and alternative medicine: a travel from recipient to explorer. Int J QualStud Health Well-being 2010;5(July), doi:10.3402/qhw.v5i2.5032.2009.

2] Skovgaard L, Bjerre L. Researching conventional and alternative practition-ers’ treatment assumptions—developing an integrated programme theoryfor combination treatment for People with Multiple Sclerosis. Eur J IntegrMed 2010;2(4):237.

3] Paterson C, et al. Evaluating complex health interventions: a critical anal-ysis of the ‘outcomes’ concept. BMC Comp Altern Med 2009;9(18),doi:10.1186/1472-6882-9-18.

4] Launsø L, Skovgaard L. The IMCO scheme as a tool in developing team-based treatment for people with multiple sclerosis. J Altern ComplementMed 2008;14(January (1)):69–77.

5] Andrew S, Halcomb EJ. Mixed methods research for the nursing and thehealth sciences. Blackwell Publishing, Ltd.; 2009.

oi:10.1016/j.eujim.2011.04.017

orking at the coalface: An action research study into thexperience of ‘integrative medicine’ in the NHS

argaret Welch

LMT (Oregon), United States

Background: This research contributes an experientialerspective to the growing body of knowledge regarding ‘inte-rative medicine’ (IM). This was accomplished by workinglongside NHS providers in two primary care clinics, deliveringassage therapy to patients referred by their GPs as part of their

ealthcare strategy. As researcher–therapist, I then consideredhe practical problems for IM from the multiple viewpoints ofts primary stakeholders: GPs, clinics, patients and the CAMherapist.

Methodology: Two very different NHS primary care clinics

ere recruited to take part in this study. Building on the work ofuff and Thomas [1], a ‘transformative’ model of interaction wasdopted so that all stakeholders could work together towards col-aborative solutions to daily situations. The aim was to study the

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116 Abstracts / European Journal of In

ractical problems for IM, looking closely and reflexively at thenterface between complementary and orthodox practitionersorking with the same patients. Throughout the study, opportu-ities arose for reflexive, inter-professional problem solving ineal-to-life situations. Data collected included questionnaires,ecorded interviews and meetings, case notes and field notes,eflexive journals, plus pictures, emails and letters. Analysis ofhe data highlighted the impacts of IM upon the various stake-olders. It also identified the wider macro-management issues ofrganisational effects, inter-professional dynamics, and patienteeds.

Findings: The reflexive cycles inherent in action research [2]enerated opportunities to identify both practical problems andollaborative solutions within the clinic. This cooperative rela-ionship worked well in the context of clinical experiences, withndications of improving patient satisfaction and patient–GPelationships. However, cycles of learning also brought to lightnexpected themes about some of the overarching barriers fac-ng IM. These barriers pertained to the unstructured and ‘adoc’ nature of ongoing relationships between CAM and ortho-ox professionals. Even if these relationships are amenable, theyre generally not consistent or strong enough to move IM for-ard significantly in the midst of the various organisational and

nter-professional barriers identified in the data gathered.Discussion: This research supports the idea that CAM should

ot be taken out of context and confined to overly positivistic orarrow definitions of efficacy. IM seeks to understand the uniqueontribution CAM could make to multidimensional and multi-isciplinary healthcare approaches [3]. In order to further theseoals, CAM professionals need to continue their efforts towardsrofessionalisation (including a commitment to research); theyeed to upgrade their dialogue with NHS policy-makers and thestablished professions of the NHS, particularly the allied health

rofessions; and they need to show a focussed interest in cre-ting structures to support IM within the NHS. Without thesefforts, there is a danger that the real (and natural) underlying

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nxieties on both sides will lead to inter-professional rivalry andncoherent healthcare strategies, a situation which tends to stiflennovation [4]. Without underpinning structures, stakeholdersho wish to collaborate are left to form loosely constructed, adoc relationships as identified by Luff and Thomas [1]. Althoughny collaboration is a positive step, these relationships can benstable and lacking in accountability.

Conclusion: Recommendations suggest that the support-ve and collaborative clinical interactions documented in thisesearch are a welcome start, but clearly not enough to sus-ain IM. More structure and training for CAM therapistsorking in NHS settings is needed in order to develop posi-

ive roles for CAM. Additionally, improved opportunities fornter-professional dialogue would help to reduce the inherentroblems of occupational closure and inter-professional con-ict between CAM and orthodox professionals. Therefore, bothStructure’ and ‘Dialogue’ are identified as vital underpinningpillars’ to support the successful interface between orthodoxnd complementary providers. These pillars represent two areasf interaction that have been neglected and yet are consideredssential to a sustainable, integrated approach.

eferences

1] Luff D, Thomas K. Models of complementary therapy provision in primarycare. In: Medical Care Research Unit. Sheffield: Sheffield; 1999.

2] Checkland P. Researching real-life: reflections on 30 years of action research.Syst Res Behav Sci 2010;27:129–32.

3] Wye L, Shaw A, Sharp D. Evaluating complementary and alternative therapyservices in primary and community care settings: a review of 25 serviceevaluations. Complem Ther Med 2006;14:220–30.

4] Boon HS, et al. The difference between integration and collaboration inpatient care: results from key informant interviews working in multipro-

715–22.

oi:10.1016/j.eujim.2011.04.018