Proches aidants en psychiatrie : quelle (in)adéquation entre besoins et offres de soutien ?

INTRODUCTION: Informal caregivers play a vital role in supporting people with severe mental illness. However, this role can leave informal caregivers with significant unmet needs. The aim of this qualitative study is to identify the extent to which the support offered to informal caregivers in adult psychiatry in French-speaking Switzerland meets their needs. METHOD: Individual semi-structured interviews and focus groups were conducted with informal caregivers, mental health professionals, and service providers. The data were analyzed by theme. RESULTS: The need for assistance and the need for information are two themes identified as prevalent among informal caregivers. Despite a consensus on the need for more support and information, informal caregivers, service providers, and health professionals do not assign the same importance to specific aspects of these themes. Suggestions for improving practices at the institutional, socio-political, and civil-society levels are put forward. Given the diversity of viewpoints on the priority needs of informal caregivers, there is a risk of offering support that only partially corresponds to the difficulties encountered by informal caregivers. CONCLUSIONS: Matching support and needs remains a major challenge. Agreeing on a consensual definition of support and information needs and proposing tailored approaches could make it possible to develop support services that meet the actual needs of informal caregivers.

Perspectives of family caregivers, health professionals, and support providers on partnership issues in adult psychiatry / Regards croisés des proches aidants, des professionnels de la santé et des prestataires de soutien concernant les enjeux de partenariat en psychiatrie adulte

Context: Family caregivers play an essential role in the continuity of care for patients with mental health problems. However, the lack of consideration for their role and difficulties in their collaboration with health professionals impact their involvement. Objective: The purpose of this study is to identify the issues underlying the family-professional partnership. Method: A qualitative and exploratory study is used to collect data from providers of support services, family caregivers of patients with psychiatric disorders, and mental health professionals. Semi-structured interviews and focus groups conducted from October 2017 to August 2018 were analyzed to determine key issues surrounding this partnership. Results: A total of thirty-two family caregivers, nine healthcare professionals, and eleven providers participated in the study. The central concerns related to the partnership are information, continuity of care, and the relationship between patients, family members, and professionals. The relational dimension appears to be an important element for all three groups of participants, who nevertheless point out difficulties with regard to their positioning in this tripartite relationship. Discussion/Conclusion: In the context of the current healthcare system, the concept of partnership creates obstacles to family caregivers being able to contribute their expertise while feeling recognized by the other actors.

Contexte: Les proches aidants jouent un rôle essentiel dans la continuité des soins des patients vivant avec des troubles psychiques ; toutefois, les difficultés de collaboration avec les professionnels de la santé impactent leur engagement. Objectif: Cette étude a pour but d'identifier les enjeux qui sous-tendent le partenariat proches- professionnels. Méthode: Un devis qualitatif et exploratoire a permis de collecter les données auprès de prestataires d'offres de soutien, de proches aidants de patients souffrant de troubles psychiatriques et de professionnels en santé mentale. Des entretiens semi-directifs et des focus groups, menés d'octobre 2017 à août 2018, ont été analysés afin de déterminer les enjeux autour du partenariat. Résultats: Au total, 32 proches aidants, 9 professionnels de la santé et 11 prestataires de soutien ont participé à l'étude. L'information, la relation entre patients, proches et professionnels, et la continuité des soins se placent au cœur des préoccupations relatives au partenariat. Discussion/conclusion: Le partenariat est un concept qui engendre des défis dans l'organisation du système de santé actuel afin que les proches aidants puissent apporter leur expertise en se sentant considérés par les autres acteurs.

[Burden and perceived stress among informal caregivers of people suffering from mental disorders]. / Fardeau et stress perçu chez les proches aidants de personnes souffrant de troubles psychiques.

Informal caregivers of people with severe mental illness are particularly at risk of experiencing high levels of burden and perceived stress, which can worsen their global health. In addition, the semi-confinement in 2020 represented a period of additional difficulties for informal caregivers in French-speaking of Switzerland. The burden represents all the negative consequences linked to the informal caregiver role. Perceived stress is the way in which the informal caregiver will perceive a potentially threatening situation, according to their coping strategies and personal resources. Burden and perceived stress can be rapidly assessed in primary care, to suggest useful and effective support interventions to the informal caregivers.

Les proches aidants de personnes atteintes d'un trouble psychique sont particulièrement à risque de vivre des niveaux élevés de fardeau et de stress perçu, ce qui peut détériorer leur état de santé globale. En outre, le semi-confinement de 2020 a représenté une période de difficultés supplémentaires pour les proches en Suisse romande. Le fardeau représente l'ensemble des conséquences défavorables relatives au rôle d'aidant. Le stress perçu est la façon dont le proche aidant va percevoir une situation potentiellement menaçante, selon ses stratégies de coping et ses ressources personnelles. Fardeau et stress perçu peuvent être évalués de façon rapide déjà en soins de première ligne afin de proposer aux proches aidants une orientation vers des interventions de soutien utiles et efficaces.

A randomized controlled trial of a targeted support program for informal caregivers in adult psychiatry.

Background: The importance of informal caregivers for persons with severe mental illness has been demonstrated. However, this role may cause a high care burden that considerably affects caregiver health. The Ensemble program is a five-session brief individual intervention designed to support informal caregivers. This trial aimed to assess the efficacy of the program versus SAU (support as usual) for participants with a high care burden. Methods: A single-center randomized controlled trial including 149 participants was conducted. Caregivers in the intervention arm participated in the Ensemble program. The effects of the intervention were assessed using mixed models for repeated measures analysis of variance on improvements in informal caregivers' psychological health status, optimism levels, burden scores, and quality of life at three time points (T0 = pretest; T1 = posttest at 2 months, and T2 = follow-up at 4 months). Results: Analysis of the Global Psychological Index showed no significant effect at the two endpoints in favor of the Ensemble group. However, the Brief Symptom Inventory-Positive Symptom Distress Index was significantly lower at the two-month follow-up. A significant reduction in burden on the Zarit Burden Interview was observed post-intervention, along with an increase in optimism levels on the Life Orientation Test-Revised at follow-up in the Ensemble group. No significant differences were observed in quality of life. Clinical improvements in both psychological health status and burden levels were also identified. Conclusion: The Ensemble program offers an inclusive approach based on a recovery perspective that significantly reduces symptom distress and burden and increases optimism among informal caregivers.Clinical trial registration: https://clinicaltrials.gov/, NCT04020497.

[The Ensemble Program: Making sense of your actions through ACT]. / Programme Ensemble : redonner du sens à ses actions grâce à l'ACT.

The Ensemble program supports informal caregivers of people with mental health problems. Tailor-made support is offered in order to target the tools that will be most useful to them in their personal situation. Acceptance and commitment therapy can be used to help them give meaning to their actions.

Women involvement in the informal caregiving field: A perspective review.

The patient recovery process of individual with mental health disorder is reinforced if they are connected with their community and supported by relatives. The literature has shown that caregivers are important, although their roles can lead to alterations in their own health; and women are the most involved in this role. The present review investigated women's involvement in the informal caregiver scientific field. A literature review indicated gender differences; researchers who are women are more interested in this field than men. Even with a good representation of women in this scientific field, the results showed a statistically significant gender difference for the first and second authors, whereas there was no significant gender difference among the last authors. More efforts must be made to recognize the importance of women's involvement in research because they raise a specific important field. Family caregivers are key players in the healthcare system, but to date, there has been little recognition of their enormous contribution. Our results also indicated the informal caregiver role is filled more by women than by men, which creates social inequalities in many domains, especially in opportunities at the professional level. Tailored interventions are required to address the specific needs and issues of family caregivers. A better redistribution of unpaid work, such as informal caregiving, compared to paid work must be made to respect gender in social existence.

Ensemble programme for early intervention in informal caregivers of psychiatric adult patients: a protocol for a randomised controlled trial.

INTRODUCTION: Informal caregivers play a major role in the support and maintenance of community patients with severe psychiatric disorders. A pilot study showed that an individualised brief intervention such as the Ensemble programme leads to significant improvements in psychological health state and optimism. METHODS AND ANALYSIS: This randomised controlled trial aims to compare the efficacy of using Ensemble in improving informal caregivers' psychological health states and the ability to play an active role in their situations with that of support as usual. Improvements on the psychological health global index will be measured three times (T0-pre, T1-post and T3 2 months follow) with standardised questionnaires (the Global Severity Index of Brief Inventory Symptoms, the Life Orientation Test-Revised, the 36-item Medical Outcome Study Short-Form Health Survey and the French Zarit Burden Interview). Differences between groups in post-test and pretest values will be examined using an analysis of covariance for each outcome variable. The severity of illness measured by the Social and Occupational Functioning Assessment Scale will also be collected at T0 and T2 to compare eventual patient improvements. At the end of the programme, the experiences of the 20 patients participating in the Ensemble programme will be evaluated qualitatively. ETHICS AND DISSEMINATION: The research protocol received full authorisation from the Human Research Ethics Committee of the Vaud state, Switzerland. The principal paper will concern the results of the experimental design used to test the Ensemble programme. The research team will prioritise open access publications. TRIAL REGISTRATION NUMBER: NCT04020497.

Optimism and the Psychological Recovery Process Among Informal Caregivers of Inpatients Suffering From Depressive Disorder: A Descriptive Exploratory Study.

Background: Informal caregivers of people suffering from depressive disorders go through a psychological recovery process. This process is dynamic, deep, catalyzed by hope and optimism and characterized by stages from which specific needs ensue. This study aimed to describe the stages of the psychological recovery process and the level of optimism among informal caregivers of psychiatric inpatients suffering from depressive disorders in order to provide adapted nursing support and psychoeducation and facilitate a patient's own recovery. Methods: A descriptive exploratory study was conducted using a convenience sample of 29 informal caregivers. Participants filled out a sociodemographic questionnaire, a specially adapted Stages of Recovery Instrument (STORI) and the Life Orientation Test-Revised (LOT-R). Results: A mean optimism score of 16.41 showed that informal caregivers are close to the level of the general European population. The sample included all the stages of the recovery process, with 34.5% of participants being in the growth stage. Informal caregivers' stages in the recovery process were negatively associated with the patient's length of illness (Rho = -.683, p = .000) and positively associated with the caregivers' level of optimism (Rho = .564, p = .001). Conclusion: During the inpatient treatment of a close relative suffering from a depressive disorder, informal caregivers go through an individual psychological recovery process involving several stages. In addition to caring for inpatients, nurses are encouraged to meet and support caregivers as soon as possible in their individual recovery process. Furthermore, the development of a suitably adapted clinical tool would facilitate the assessment of the informal caregiver's stage in the recovery process within care units. A multidisciplinary approach is needed in this domain.