Résumés
Résumé
L’objectif de cet article est de dresser un portrait de l’état des connaissances des études qualitatives et quantitatives portant sur l’expérience subjective des aidants naturels de personnes atteintes d’un trouble de la conduite alimentaire. L’analyse des résultats des 26 articles sélectionnés fait ressortir trois grands thèmes : l’expérience subjective du rôle d’aidant, la perception de la maladie, et la perception de l’aide offerte et des professionnels. Les études qualitatives et quantitatives s’accordent sur le fait que prendre soin d’une personne souffrant d’un TCA est une expérience difficile qui entraîne des conséquences importantes au niveau émotionnel. Les résultats de la recension sont discutés et des applications cliniques sont proposées. Des orientations pour des recherches futures sont suggérées.
Mots-clés :
- troubles alimentaires,
- expérience d’aidant,
- sentiment de fardeau,
- revue critique
Abstract
The aim of this article is to review the available qualitative and quantitative literature on family caregiving experience in eating disorders. Analysis of the 26 selected studies highlights three major themes: the subjective caregiving experience, illness perception, and perception of help provided and of professionals involved. The qualitative and quantitative studies both view the caregiving role as difficult and as having important emotional consequences. Results of the review are discussed and followed by clinical application suggestions. Finally, some areas for future research are presented.
Keywords:
- eating disorders,
- caregiving experience,
- sense of burden,
- critical literature review
Parties annexes
Bibliographie
- Caqueo-Urizar, A., Miranda-Castillo, C., Lemos Giraldez, S., Lee Maturana, S. L., Ramirez Perez, M., & Mascayano Tapia, F. (2014). An updated review on burden on caregivers of schizophrenia patients. Psicothema, 26(2), 235-243. doi: 10.7334/psicothema2013.86
- Cohn, L. (2005). Parents' voices: What they say is important in the treatment and recovery process. Eating Disorders: The Journal of Treatment & Prevention, 13(4), 419-428.
- Cook-Darzens, S. (2014). Approches familiales des troubles du comportement alimentaire de l'enfant et de l'adolescent préface de Robert Pauzé. Toulouse: Érès éd.
- Coomber, K., & King, R. M. (2012). Coping strategies and social support as predictors and mediators of eating disorder carer burden and psychological distress. Social Psychiatry and Psychiatric Epidemiology, 47(5), 789-796.
- Coomber, K., & King, R. M. (2013a). A longitudinal examination of burden and psychological distress in carers of people with an eating disorder. Social Psychiatry and Psychiatric Epidemiology, 48(1), 163-171.
- Coomber, K., & King, R. M. (2013b). Perceptions of carer burden: Differences between individuals with an eating disorder and their carer. Eating Disorders: The Journal of Treatment & Prevention, 21(1), 26-36.
- Cottee-Lane, D., Pistrang, N., & Bryant-Waugh, R. (2004). Childhood onset anorexia nervosa: The experience of parents. European Eating Disorders Review, 12(3), 169-177.
- de Alda, Í. O., Espina, A., & Ortego, M. A. (2006). Un estudio sobre personalidad, ansiedad y depresión en padres de pacientes con un trastorno alimentario. Clínica y Salud, 17(2), 151-170.
- Dimitropoulos, G., Carter, J., Schachter, R., & Woodside, D. (2008). Predictors of family functioning in carers of individuals with anorexia nervosa. International Journal of Eating Disorders, 41(8), 739-747.
- Dorvil, H, & Guttman, H. (1997). 35 ans de désinstitutionnalisation au Québec 1961-1996. H. Dorvil, HA Guttman, N. Ricard, N. &A. Villeneuve, Défis de la reconfiguration des services de santé mentale: Québec: Gouvernement du Québec, Ministère de la Santé et des Services sociaux.
- Espíndola, C. R., & Blay, S. L. (2009). Family perception of anorexia and bulimia: a systematic review. Revista de saude publica, 43(4), 707-716.
- Garner, D. M., & Bemis, K. M. (1982). A cognitive-behavioral approach to anorexia nervosa. Cognitive therapy and research, 6(2), 123-150.
- Gonzalez, N., Padierna, A., Martin, J., Aguirre, U., & Quintana, J. M. (2012). Predictors of change in perceived burden among caregivers of patients with eating disorders. Journal of Affective Disorders, 139(3), 273-282.
- Graap, H., Bleich, S., Herbst, F., Scherzinger, C., Trostmann, Y., Wancata, J., & de Zwaan, M. (2008). The needs of carers: A comparison between eating disorders and schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 43(10), 800-807.
- Highet, N., Thompson, M., & King, R. M. (2005). The Experience of Living with a Person with an Eating Disorder: The Impact on the Carers. Eating Disorders: The Journal of Treatment & Prevention, 13(4), 327-344.
- Hoenig, J., & Hamilton, M. W. (1966). The schizophrenic patient in the community and his effect on the household. Int J Soc Psychiatry, 12(3), 165-176.
- Hoskins, M. L., & Lam, E. (2001). The impact of daughters' eating disorders on mothers' sense of self: Contextualizing mothering experiences. Canadian Journal of Counselling, 35(2), 157-175.
- Keitel, M. A., Parisi, M., Whitney, J. L., & Stack, L. F. (2010). Salient stressors for mothers of children and adolescents with anorexia nervosa. Eat Disord, 18(5), 435-444. doi: 10.1080/10640266.2010.511937
- Kyriacou, O., Treasure, J., & Schmidt, U. (2008). Understanding how parents cope with living with someone with anorexia nervosa: Modelling the factors that are associated with carer distress. International Journal of Eating Disorders, 41(3), 233-242.
- le Grange, D., Lock, J., Loeb, K., & Nicholls, D. (2010). Academy for Eating Disorders position paper: the role of the family in eating disorders. Int J Eat Disord, 43(1), 1-5. doi: 10.1002/eat.20751
- Lefley, H. P. (1989). Family burden and family stigma in major mental illness. American Psychologist, 44(3), 556.
- Macdonald, P., Murray, J., Goddard, E., & Treasure, J. (2011). Carer's experience and perceived effects of a skills based training programme for families of people with eating disorders: A qualitative study. European Eating Disorders Review, 19(6), 475-486.
- Martin, J., Padierna, A., Aguirre, U., Gonzalez, N., Munoz, P., & Quintana, J. M. (2013). Predictors of quality of life and caregiver burden among maternal and paternal caregivers of patients with eating disorders. Psychiatry Research Aug(Pagination), No Pagination Specified.
- McDonell, M. G., Short, R. A., Berry, C. M., & Dyck, D. G. (2003). Burden in schizophrenia caregivers: impact of family psychoeducation and awareness of patient suicidality. Family Process, 42(1), 91-103.
- McMaster, R., Beale, B., Hillege, S., & Nagy, S. (2004). The parent experience of eating disorders: Interactions with health professionals. International Journal of Mental Health Nursing, 13(1), 67-73.
- NICE. (2004). Eating disorders—core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders Clinical Guideline (Vol. 9). London: NICE
- Padierna, A., Martin, J., Aguirre, U., Gonzalez, N., Munoz, P., & Quintana, J.M. (2013). Burden of caregiving amongst family caregivers of patients with eating disorders. Social Psychiatry and Psychiatric Epidemiology, 48(1), 151-161.
- Perkins, S., Winn, S., Murray, J., Murphy, R., & Schmidt, U. (2004). A Qualitative Study of the Experience of Caring for a Person with Bulimia Nervosa. Part 1: The Emotional Impact of Caring. International Journal of Eating Disorders, 36(3), 256-268.
- Raenker, S., Hibbs, R., Goddard, E., Naumann, U., Arcelus, J., Ayton, A., et al. (2013). Caregiving and coping in carers of people with anorexia nervosa admitted for intensive hospital care. International Journal of Eating Disorders, 46(4), 346-354.
- Rogeberg, K. (1990). Eating disorders and the family. Experiences gathered in a parent support group. Acta Psychiatrica Scandinavica, Supplementum, 361, 50-51.
- Santonastaso, P., Saccon, D., & Favaro, A. (1997). Burden and psychiatric symptoms on key relatives of patients with eating disorders: a preliminary study. Eating & Weight Disorders: EWD, 2(1), 44-48.
- Sepulveda, A. R., Whitney, J., Hankins, M., & Treasure, J. (2008). Development and validation of an Eating Disorders Symptom Impact Scale (EDSIS) for carers of people with eating disorders. Health Qual Life Outcomes, 6, 28. doi: 10.1186/1477-7525-6-28
- Sepulveda, A.R., Graell, M., Berbel, E., Anastasiadou, D., Botella, J., Carrobles, J.A., et al. (2012). Factors associated with emotional well-being in primary and secondary caregivers of patients with eating disorders. European Eating Disorders Review, 20(1), e78-e84. doi: 10.1002/erv.1118
- Svensson, E., Nilsson, K., Levi, R., & Suarez, N.C. (2013). Parents' experiences of having and caring for a child with an eating disorder. Eating Disorders: The Journal of Treatment & Prevention, 21(5), 395-407.
- Szmukler, G. I., Burgess, P., Herrman, H., Benson, A., Colusa, S., & Bloch, S. (1996). Caring for relatives with serious mental illness: the development of the Experience of Caregiving Inventory. Soc Psychiatry Psychiatr Epidemiol, 31(3-4), 137-148.
- Thomson, S., Marriott, M., Telford, K., Law, H;, McLaughlin, J., & Sayal, K. (2014). Adolescents with a diagnosis of anorexia nervosa: Parents' experience of recognition and deciding to seek help. Clinical Child Psychology & Psychiatry, 19(1), 43-57.
- Treasure, J., Murphy, T., Szmukler, T., Todd, G., Gavan, K., & Joyce, J. (2001). The experience of caregiving for severe mental illness: A comparison between anorexia nervosa and psychosis. Social Psychiatry and Psychiatric Epidemiology, 36(7), 343-347.
- Treasure, J., & Schmidt, U. (2013). The Cognitive-Interpersonal Maintenance Model of Anorexia Nervosa Revisited: A summary of the evidence for cognitive, socio-emotional and interpersonal predisposing and perpetuating factors. J Eat Disord, 1, 13.
- Whitney, J., Haigh, R., Weinman, J., & Treasure, J. (2007). Caring for people with eating disorders: Factors associated with psychological distress and negative caregiving appraisals in carers of people with eating disorders. British Journal of Clinical Psychology, 46(4), 413-428.
- Whitney, J., Murray, J., Gavan, K., Todd, G., Whitaker, W., & Treasure, J. (2005). Experience of caring for someone with anorexia nervosa: Qualitative study. The British Journal of Psychiatry, 187(5), 444-449.
- Winn, S., Perkins, S., Murray, J., Murphy, R., & Schmidt, U. (2004). A qualitative study of the experience of caring for a person with bulimia nervosa. Part 2: Carers' needs and experiences of services and other support. International Journal of Eating Disorders, 36(3), 269-279.
- Winn, S., Perkins, S., Walwyn, R., Schmidt, U., Eisler, I., Treasure, J., et al. (2007). Predictors of mental health problems and negative caregiving experiences in cares of adolescents with bulimia nervosa. International Journal of Eating Disorders, 40(2), 171-178.
- Woerwag-Mehta, Sabine, & Treasure, Janet. (2008). Causes of anorexia nervosa. Psychiatry, 7(4), 147-151.
- Zabala, M.J., Macdonald, P., & Treasure, J. (2009). Appraisal of caregiving burden, expressed emotion and psychological distress in families of people with eating disorders: A systematic review. European Eating Disorders Review, 17(5), 338-349.