Conclusion

Des facteurs multiples et interdépendants peuvent influencer l’adoption, le maintien ou l’abandon d’un comportement d’autogestion chez les personnes avec la DM1. Particulièrement, leurs habiletés sociales, cognitives, émotionnelles et motrices sont contraintes par une atteinte des fonctions exécutives et des atteintes au niveau moteur. Ces habiletés, étant reconnues comme essentielles pour exercer un pouvoir d’agir sur leur situation, exposent ces personnes à des difficultés pour résoudre leurs problèmes. En ce sens, une intervention d’éducation thérapeutique fondée sur pouvoir d’agir constitue une avenue intéressante pour améliorer les compétences d’autogestion des personnes avec la DM1.

Financement

Ce projet a pu être réalisé grâce au soutien financier du Réseau de recherche en interventions en sciences infirmières du Québec et la Rare Disease Fundation. L’auteure principale a bénéficié de bourses d’études de l’Université de Sherbrooke, du Réseau de recherche en interventions en sciences infirmières du Québec, de la Fondation GO, Fonds de la Recherche en Santé du Québec (FRSQ), Corporation de recherche et d'action sur les maladies héréditaires (CORAMH).

Conflit d’intérêts

4.2.11 Références

1. Sidani S, S, Braden CJ. Design, evaluation, and translation of nursing interventions. Chichester, UK: Wiley-Blackwell; 2011. 320 p.

2. Harper PS. Myotonic dystrophy. 3 ed. London, UK: WB Saunders; 2001. 436 p. 3. Mahn VA, Spross JA, Hamric AB. Nurse case management as an advanced practice

role. Advanced nursing practice: an integrative approach. Philadelphia, PA: W.B. Saunders; 1996. p. 445-65.

4. Mathieu J, Prévost C. Epidemiological surveillance of myotonic dystrophy type 1 : A 25-year population-based study. Neuromuscular Disorders. 2012;22(11):974-9. 5. Meola G, Sansone V. Cerebral involvement in myotonic dystrophies. Muscle

Nerve. 2007;36(3):294-306.

6. Monteiro R, Bento J, Gonçalves MR, Pinto T, Winck JC. Genetics correlates with lung function and nocturnal ventilation in myotonic dystrophy. Sleep & Breathing = Schlaf & Atmung. 2013;17(3):1087-92.

7. LaDonna KA, Ghavanini AA, Venance SL. Truths and misinformation : A qualitative exploration of myotonic dystrophy. The Canadian Journal Of Neurological Sciences Le Journal Canadien Des Sciences Neurologiques. 2015;42(3):187-94.

8. Lavoie M. Développement d’une intervention d’éducation thérapeutique fondée sur le pouvoir d’agir pour les personnes avec la dystrophie myotonique de type I [Thèse]. Sherbrooke: Université de sherbrooke; En préparation.

9. Ahlstrom G, Sjoden PO. Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy. J Psychosom Res. 1996;41(4):365-76. 10. Brien M. Habitudes alimentaires et apports nutritionnels chez les personnes

présentant une dystrophie myotonique de type 1 [Mémoire de maîtrise]. Chicoutimi: Université du Québec à Chicoutimi; 2016.

11. Gagnon C, Chouinard MC, Laberge L, Brisson D, Gaudet D, Lavoie M, et al. Prevalence of Lifestyle risk factors in myotonic dystrophy type 1. Canadian Journal of Neurological Sciences. 2013;40(1):42-7.

12. Funnell MM, Anderson RM, Arnold MS, Barr PA, Donnelly M, Johnson PD, et al. Empowerment : An idea whose time has come in diabetes education. The Diabetes Educator. 1991;17(1):37-41.

13. Green LW, Kreuter MW. Health program planning : An educational and ecological approach. 4 ed. New York, NY: McGraw-Hill; 2005.

14. Laberge L, Prévost C, Perron M, Mathieu J, Auclair J, Gaudreault M, et al. Clinical and genetic knowledge and attitudes of patients with myotonic dystrophy type 1. Public Health Genomics. 2010;13(7-8):424-30.

15. Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012;12:80-.

16. World Health Organization. Skills for health : Skills-based health education including life skills. An important component of a Child-Friendly/Health-Promoting School. Atlanta, Georgia, USA: World Health Organization; 2003.

17. Aujoulat I. Vers une identification des compétences transversales favorisant le processus d’adaptation psychosociale des patients à leur maladie. Journal du Diabète Education de Langue Française. 2005;15(1):11-4.

18. Ahlstrom G, Wenneberg S. Coping with illness-related problems in persons with progressive muscular diseases: the Swedish version of the Ways of Coping Questionnaire. Scand J Caring Sci. 2002;16(4):368-75.

19. Chouinard MC, Gagnon C, Lavoie M, Bouchard C, Mathieu J. The lived experience of patients with myotonic dystrophy Type 1. Medizinische Genetik. 2009;21(3):443.

20. Gittelsohn J, Evans M, Story M, Davis SM, Metcalfe L, Helitzer DL, et al. Multisite formative assessment for the pathways study to prevent obesity in American indian schoolchildren. The American Journal of Clinical Nutrition. 1999;69(4 Supp):767S- 72S.

21. Chouinard MC, Lavoie M, Gagnon C, Leclerc N, Larouche A, Bouchard N, et al. Gestion de cas : un modèle en clinique de maladies neuromusculaires. Perspective infirmière. 2015;12(5):51-6.

22. Patton M. Qualitative research & evaluation methods. 4 ed. Thousand Oaks, CA: Sage Publications, Inc.; 2014.

23. Casey D. Nurses’ perceptions, understanding and experiences of health promotion. Journal of Clinical Nursing. 2007;16(6):1039-49.

24. Gagnon C, Noreau L, Moxley RT, Laberge L, Jean S, Richer L, et al. Towards an integrative approach to the management of myotonic dystrophy type 1. Journal of Neurology, Neurosurgery & Psychiatry. 2007;78(8):800-6.

25. Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, et al. Quick assessment of literacy in primary care: The newest vital sign. Annals of Family Medicine. 2005;3(6):514-22.

26. Fleming ND. Teaching and learning styles: VARK strategies. . 2 ed. Christchurch, NZ: Author; 2006.

27. Leite WL, Svinicki M, Shi Y. Attempted validation of the scores of the VARK: Learning styles inventory with multitrait-multimethod confirmatory factor analysis models. Educational and Psychological Measurement. 2010;70(2):323-39.

28. Krueger RA, Casey MA. Focus groups: A practical guide for applied research. 5 ed. Thousand Oaks, CA: Sage Publishing; 2014.

29. Mathieu J, Boivin H, Meunier D, Gaudreault M, Begin P. Assessment of a disease- specific muscular impairment rating scale in myotonic dystrophy. Neurology. 2001;56(3):336-40.

30. McCloskey G, Perkins LA, Van Divner B. Assessment and intervention for executive function difficulties. New York, NY: Routledge; 2009.

31. Miles MB, Huberman AM, Saldana J. Qualitative data analysis : A methods sourcebook. Thousand Oaks, CA: SAGE Publications, Inc.; 2014.

32. Laberge L, Begin P, Dauvilliers Y, Beaudry M, Laforte M, Jean S, et al. A polysomnographic study of daytime sleepiness in myotonic dystrophy type 1. J Neurol Neurosurg Psychiatry. 2009;80(6):642-6.

33. Ronnblom A, Forsberg H, Danielsson A. Gastrointestinal symptoms in myotonic dystrophy. Scandinavian Journal of Caring Sciences. 1996;31(7):654-7.

34. Herrman JW. Creative teaching strategies for the nurse educator. Philadelphia, PA: F. A. Davis; 2008.

34. Mazeau M, Pouhet A. Neuropsychologie et troubles d'apprentissages chez l'enfant : du développement typique aux "dys". Issy-les-Moulineaux cedex: Elsevier Masson; 2005.

35. Laberge L, Veillette S, Mathieu J, Auclair J, Perron M. The correlation of CTG repeat length with material and social deprivation in myotonic dystrophy. Clinical Genetics. 2007;71(1):59-66.

36. Sistiaga A, Urreta I, Jodar M, Cobo AM, Emparanza J, Otaegui D, et al. Cognitive/personality pattern and triplet expansion size in adult myotonic dystrophy type 1 (DM1): CTG repeats, cognition and personality in DM1. Psychological Medicine. 2010;40(3):487-95.

37. Conseil canadien sur l'apprentissage. Littératie en santé au Canada: une question de bien-être. Ottawa, ON: Auteur; 2008.

38. Irwin S, Jungeblut K, Jenkins L, Kolstad A. Adult literacy in America a first look at the findings of the national adult literacy survey. . Washington: Department of education office of educational research and improvement; 2002.

39. Couture ÉM, Chouinard MC, Fortin M, Hudon C. The relationship between health literacy and quality of life among frequent users of health care services: a cross- sectional study. Health & Quality of Life Outcomes. 2017;15:1-6.

40. Jordan JE, Buchbinder R, Briggs AM, Elsworth GR, Busija L, Batterham R, et al. The Health Literacy Management Scale (HeLMS): A measure of an individual's capacity to seek, understand and use health information within the healthcare setting. Patient Education & Counseling. 2013;91(2):228-35.

41. Laberge L, Begin P, Richer L, Jean S, Mathieu J. Fatigue and daytime sleepiness in patients with myotonic dystrophy type 1: To lump or split? Neuromuscular Disorders. 2009;19(6):397-402.

42. Marin RS, Biedrzycki RC, Firinciogullari S. Reliability and validity of the Apathy Evaluation Scale. Psychiatry Research. 1991;38(2):143-62.

43. Stewart MN. Pratical patient literay : The medagogy model. New York: The McGraw-Hill Companies; 2012.

44. Gillen G, Rubio KB. Treatment of cognitive-perceptual deficits : A functional- based approach. In: Gillen G, editor. Stoke rehabilitation : A function-based approach. 3 ed. St-Louis, MO: Elsevier Mosby; 2011.

45. Damasio AR. L’erreur de Descartes. Paris: Odile Jacob; 1995.

46. Kobayakawa M, Tsuruya N, Kawamura M. Theory of mind impairment in adult- onset myotonic dystrophy type 1. Neuroscience Research. 2012;72(4):341-6.

47. Frith CD, Frith U. Interacting minds--a biological basis. Science (New York, NY). 1999;286(5445):1692-5.

48. Smith AE, McMullen K, Jensen MP, Carter GT, Molton IR. Symptom burden in

persons with myotonie and facioscapulohumeral muscular dystrophy. American Journal of Physical Medicine & Rehabilitation. 2014;93(5):387-95.

49. Fleming J, Ownsworth T. Educational partnerships with clients who have cognitive impairment. In: McKenna K, Tooth L, editors. Client education : A partnership approach for health pratitioners. San Diego, CA: Plural Publishing Inc.; 2006. 50. LaDonna KA, Venance SL. Picturing the experience of living with myotonic

dystrophy (DM1): A qualitative exploration using photovoice. Journal of Neuroscience Nursing. 2015;47(5):285-95.

4.3 Résultats complémentaires du Volet 1 - Élaboration de la théorie du problème