cette annonce. Ces résultats confrontés aux données de la littérature et aux recommandations
actuelles [3, 48, 49, 50] ont permis d’établir un guide à destination des professionnels (Annexe
2). Une plus grande transparence des soignants concernant le diagnostic ainsi qu’une meilleure
communication permettrait d’améliorer l’expérience des familles ainsi que la prise en charge
globale du patient. Les familles décrivent un besoin important d’information,
d’accompagnement et de soutien par les soignants auquel il convient de proposer des réponses
adaptées.
40
1
Carpentier N. Le long voyage des familles : la relation entre la psychiatrie et la famille au
cours du XXe siècle. sosan. 2001;19(1):79‑106.
2
Recommendations | Supporting adult carers | Guidance | NICE [Internet]. NICE; [cité 4 avr
2021]. Disponible sur: https://www.nice.org.uk/guidance/ng150/chapter/Recommendations
3Butzlaff RL, Hooley JM. Expressed Emotion and Psychiatric Relapse: A Meta-analysis.
Archives of General Psychiatry. 1 juin 1998;55(6):547-52.
4
Pharoah FMari JRathbone JWong W Family intervention for schizophrenia. Cochrane
Database Syst Rev 2006; (4) CD000088.
5
Awad AG, Voruganti LNP. The burden of schizophrenia on caregivers: a review.
Pharmacoeconomics. 2008;26(2):149‑62.
6
Outram S, Harris G, Kelly B, Cohen M, Sandhu H, Vamos M, et al. Communicating a
schizophrenia diagnosis to patients and families: a qualitative study of mental health clinicians.
Psychiatr Serv. 1 avr 2014;65(4):551-4.
7
Hodé Y. Psychoéducation des patients et de leurs proches dans les épisodes psychotiques.
L’Encéphale. sept 2013;39:S110-4.
8
Loughland C, Cheng K, Harris G, Kelly B, Cohen M, Sandhu H, et al. Communication of a
schizophrenia diagnosis: A qualitative study of patients’ perspectives. Int J Soc Psychiatry.
déc 2015;61(8):729-34.
9
Clafferty RA, McCabe E, Brown KW. Conspiracy of silence? Telling patients with
schizophrenia their diagnosis. Psychiatric Bulletin. sept 2001;25(9):336‑9.
10
Cairns VA, Reid GS, Murray C. Family members’ experience of seeking help for first-
episode psychosis on behalf of a loved one: a meta-synthesis of qualitative research. Early
Intervention in Psychiatry. 2015;9(3):185‑99.
11
American Psychiatric Association (APA) (2013) Manuel diagnostique et statistique des
troubles mentaux: DSM-5. APA, Arlington
12
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research
(COREQ): a 32-item checklist for interviews and focus groups. International Journal for
Quality in Health Care. 1 déc 2007;19(6):34957.
13
QSR International (1999) NVivo Qualitative Data Analysis Software [Software]. Available
from https://qsrinternational.com/nvivo/nvivo-products/
14
Malterud K. Qualitative research: standards, challenges, and guidelines. The Lancet. 11 août
2001;358(9280):483‑8.
15
Mays N, Pope, C. (1995). Qualitative research: Observational methods in health care settings.
BMJ (Clinical Research Ed.), 311(6998), 182–184.
41
16
Mays N, Pope C. Assessing quality in qualitative research. BMJ. 1 janv
2000;320(7226):50-2.
17
Outram S, Harris G, Kelly B, Bylund CL, Cohen M, Landa Y, et al. ‘We didn’t have a clue’:
Family caregivers’ experiences of the communication of a diagnosis of schizophrenia. Int J Soc
Psychiatry. févr 2015;61(1):10-6.
18
Perkins A, Ridler J, Browes D, Peryer G, Notley C, Hackmann C. Experiencing mental
health diagnosis: a systematic review of service user, clinician, and carer perspectives across
clinical settings. Lancet Psychiatry. sept 2018;5(9):747‑64.
19
Schaepe KS. Bad news and first impressions: Patient and family caregiver accounts of
learning the cancer diagnosis. Social Science & Medicine. sept 2011;73(6):912‑21.
20
Locock L, Nettleton S, Kirkpatrick S, Ryan S, Ziebland S. ‘I knew before I was told’:
Breaches, cues and clues in the diagnostic assemblage. Social Science & Medicine. avr
2016;154:85-92.
21
Blaxter M. Diagnosis as category and process: The case of alcoholism. Social Science &
Medicine Part A: Medical Psychology & Medical Sociology. 1 janv 1978;12:9-17.
22
Jutel A, Nettleton S. Towards a sociology of diagnosis: Reflections and opportunities. Social
Science & Medicine. 1 sept 2011;73(6):793-800.
23
Milton AC, Mullan B, Hunt C. Information giving challenges and support strategies at the
time of a mental health diagnosis: qualitative views from Australian health professionals. Soc
Psychiatry Psychiatr Epidemiol 2016; 51: 735–46 doi:10.1007/s00127-016-1187-6.
24
Franz L, Carter T, Leiner AS, Bergner E, Thompson NJ, Compton MT. Stigma and treatment
delay in first-episode psychosis: a grounded theory study. Early Intervention in Psychiatry.
févr 2010;4(1):47‑56.
25
Corcoran C, Gerson R, Sills-Shahar R, Nickou C, McGlashan T, Malaspina D, et al.
Trajectory to a first episode of psychosis: a qualitative research study with families: Qualitative
family study of first psychosis. Early Intervention in Psychiatry. 27 nov 2007;1(4):308‑15.
26Del Goleto S, Younès N, Grevin I, Kostova M, Blanchet A. Analyse qualitative du vécu
d’aidants familiaux de patients atteints de schizophrénie à différents stades d’évolution de la
maladie. Annales Médico-psychologiques, revue psychiatrique. 1 oct 2019;177(8):740‑8.
27Seeman MV. Breaking bad news: schizophrenia. J Psychiatr Pract. juill 2010;16(4):269‑76.
28Chevrier F, M’bailara K. Penser le dispositif d’annonce diagnostique en santé mentale.
L’Encéphale. 1 nov 2019;45(5):451‑3.
29
Caqueo-Urízar A, Rus-Calafell M, Craig TKJ, Irarrazaval M, Urzúa A, Boyer L, et al.
Schizophrenia: Impact on Family Dynamics. Curr Psychiatry Rep. janv 2017;19(1):2.
30
Hoenig J, Hamilton MW. The Schizophrenic Patient in the Community and His Effect On
the Household. Int J Soc Psychiatry. juin 1966;12(3):165‑76.
42
31
Karaçar Y, Bademli K. Relationship between perceived social support and self stigma in
caregivers of patients with schizophrenia. Int J Soc Psychiatry. 17 mars
2021;002076402110018.
32
McCann TV, Lubman DI, Clark E. Responding to Stigma: First-Time Caregivers of Young
People With First-Episode Psychosis. PS. 1 mai 2011;62(5):548‑50.
33
Galinowski A. L’annonce du diagnostic en psychiatrie. Laennec. 2011;Tome 59(3):44‑58.
34Darmi E, Bellali T, Papazoglou I, Karamitri I, Papadatou D. Caring for an intimate stranger:
parenting a child with psychosis. 2016;9.
35
Eassom E, Giacco D, Dirik A, Priebe S. Implementing family involvement in the treatment
of patients with psychosis: a systematic review of facilitating and hindering factors. BMJ
Open. 3 oct 2014;4(10):e006108.
36
Rose LE, Mallinson RK, Walton-Moss B. Barriers to family care in psychiatric settings. J
Nurs Scholarsh 2004;36:39–47.
37
Winefield HR, Burnett PL. Barriers to an alliance between family and professional
caregivers in chronic schizophrenia. Journal of Mental Health. 1 janv 1996;5(3):223‑32.
38Psychiatrie et Santé Mentale 2011-2015 [Internet]. Ministère des Solidarités et de la Santé.
Disponible sur:
https://solidarites-sante.gouv.fr/prevention-en-sante/sante-
mentale/article/plan-psychiatrie-et-sante-mentale-2011-2015
39
Pinfold, V. & Corry, P. (2003) Under Pressure: The Impact of Caring on People Supporting
Family Members or Friends with Mental Health Problems. Rethink. under-pressure.pdf
[Internet]. [cité 28 mars 2021]. Disponible sur: https://www.rethink.org/media/2695/under-
pressure.pdf
40
Askey R, Holmshaw J, Gamble C, Gray R. What do carers of people with psychosis need
from mental health services? Exploring the views of carers, service users and professionals.
Journal of Family Therapy. 2 juill 2009;31:310‑31.
41
Gray B, Robinson C, Seddon D, Roberts A. ‘Confidentiality smokescreens’ and carers for
people with mental health problems: the perspectives of professionals. Health & Social Care
in the Community. 2008;16(4):378‑87.
42
Slade M, Pinfold V, Rapaport J, Bellringer S, Banerjee S, Kuipers E, et al. Best practice
when service users do not consent to sharing information with carers: National multimethod
study. The British Journal of Psychiatry. févr 2007;190(2):148‑55.
43
Verma PK, Walia TS, Chaudhury S, Srivastava S. Family psychoeducation with caregivers
of schizophrenia patients: Impact on perceived quality of life. Ind Psychiatry J.
2019;28(1):19‑23.
44
Hodé Y, Krychowski R, Beck N, Vonthron R, Rouyère N, Huentz M, et al. Effet d’un
programme psychoéducatif sur l’humeur des familles des malades souffrant de schizophrénie.
Journal de Thérapie Comportementale et Cognitive. sept 2008;18(3):104‑7.
43
45
Pitschel-Walz G, Leucht S, Bäuml J, Kissling W, Engel RR. The Effect of Family
Interventions on Relapse and Rehospitalization in Schizophrenia—A Meta-analysis.
Schizophr Bull. 1 janv 2001;27(1):73‑92.
46
Rattaz C, Alcaraz-Darrou C, Baghdadli A. Évaluation des effets d’un groupe
d’accompagnement parental sur le stress et la qualité de vie après l’annonce du diagnostic de
Trouble du Spectre Autistique (TSA) chez leur enfant. Annales Médico-psychologiques, revue
psychiatrique. oct 2016;174(8):644‑50.
47
Bucci S, Berry K, Barrowclough C, Haddock G. Family Interventions in Psychosis: A
Review of the Evidence and Barriers to Implementation. Australian Psychologist. 1 févr
2016;51(1):62‑8.
48
Haute Autorité de Santé. Annoncer une mauvaise nouvelle. Saint-Denis La Plaine: HAS;
2008
49
Haute Autorité de Santé. Annonce et accompagnement du diagnostic d’un patient ayant une
maladie chronique. Saint-Denis La Plaine: HAS; 2014.
50
Recommendations | Psychosis and schizophrenia in adults: prevention and management |
Guidance | NICE [Internet]. Disponible sur:
https://www.nice.org.uk/guidance/cg178/chapter/1-Recommendations
44
Annexe 1 : Trame d’entretien qualitatif semi-structuré utilisée
dans l’étude
1. Parcours avant l’annonce
Comment avez-vous perçu les premiers signes de la maladie ?
Dans le document
Étude qualitative auprès des proches de patients avec schizophrénie : vécu, attentes et impact de l’annonce diagnostique
(Page 41-46)