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Editorial
. 2018 May;23(2):229-237.
doi: 10.1111/bjhp.12287. Epub 2017 Dec 19.

Challenges and proposed solutions for formative research to inform systematic intervention development in rare and unstudied conditions: The case example of Xeroderma Pigmentosum

Kirby Sainsbury  1 , Jessica Walburn  2 , Vera Araujo-Soares  1 , John Weinman  2
Affiliations
Editorial

Challenges and proposed solutions for formative research to inform systematic intervention development in rare and unstudied conditions: The case example of Xeroderma Pigmentosum

Kirby Sainsbury et al. Br J Health Psychol. 2018 May.
No abstract available

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Figures

Figure 1
Figure 1
Graphical summary of the steps involved in formative research for systematic intervention development and suggested adaptations and change in emphasis for rare diseases. Notes: Regular font (top of each box) = steps involved in existing approaches; bold/italic font (bottom of each box) = adaptations for rare diseases; lighter text and bolded boxes/arrows indicate additional changes in emphasis in rare diseases; BCTs = behaviour change techniques; BCW = behaviour change wheel; IM = intervention mapping; MRC = Medical Research Council guidance for the development and evaluation of complex interventions; COM‐B = capability opportunity motivation‐behaviour model; TDF = theoretical domains framework. Although understanding the target behaviour and identifying the causal mechanisms/selecting a theory base may happen in parallel (as both previous and original research contribute to answering these questions), a comprehensive understanding of the former will also enable the latter; depending on what is identified using previous and original research, the selection of a theory base may not involve using one theory to the exclusion of others – instead, the theory base may include constructs and mechanisms from various theories and in combinations that have not previously been tested (prior to your study), if this approach provides the best fit to the data gathered.
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References

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    1. Araujo‐Soares, V. , Hankonen, N. , Presseau, J. , Rodrigues, A. , & Sniehotta, F. (unpublished data). Developing behaviour change interventions for self‐management in chronic illness: An integrative overview. Submitted to European Psychologist. - PMC - PubMed
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    1. Cooper, V. , & Clatworthy, J. (2016). Adherence research summarised: Unique patient challenges and support solutions in rare diseases. Retrieved from http://www.atlantishealthcare.com/

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