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.

Coping profiles of family caregivers of people with schizophrenia: differentiations between parent and sibling caregivers.

BACKGROUND: Prior research on informal caregivers of people with schizophrenia (PWS) has primarily focused on parental caregivers. However, siblings also play an important role in the recovery process of PWS. AIMS: The aim of this study is to compare the coping profiles of family caregivers according to whether they are siblings or parents of the PWS. METHOD: Parent and sibling caregivers (N = 181) completed the Family Coping Questionnaire (FCQ), which assessed their coping strategies. RESULTS: The results reveal that parents and siblings do not use the same coping strategies and styles. Three coping profiles were identified depending on the caregiver's relationship with the PWS. Most parents displayed an undifferentiated profile (96.7%), while siblings were more heterogeneously distributed among the undifferentiated profile (58.3%), problem-focused profile (37.5%), and emotion and social support-focused profile (4.2%). CONCLUSIONS: These findings suggest that the coping capacities of family caregivers to deal with the illness of their sibling or child with schizophrenia are diverse and that it is important to differentiate among them. This would enable these caregivers to benefit from support that could be tailored to their specific needs.

Lessons Learned from the Covid-19 Crisis: Recommendations for Action to Optimize Occupational Health in Mental Health Professionals in Europe.

Objective: The Covid-19 health crisis has disrupted the organization and functioning of European mental health and psychiatric services, impacting the working conditions - already difficult before the epidemic - of professionals working therein. The Psy-GIPO2C project investigated the impact of the pandemic on these professionals. The Psy-GIPOC2C project has been co-funded by the Agence Nationale de la Recherche française (ANR, French National Research Agency) and the Centre-Val de Loire region (France). Method: This research took the form of a collaborative mixed methods study. The data collected through qualitative and quantitative research were analyzed during a working session held by the research consortium, which resulted in the formulation of recommendations for action to optimize the occupational health of European mental health professionals. Results: This research made it possible to identify and explain the extent to which, and the ways in which, the reorganization of European mental health services has impacted the mental health of the professionals working therein, and, in particular, to highlight the fact that the unprecedented use of digital devices has generated stress, and even tension, within these services. Conclusions: It is important to promote well-being at work among European mental health professionals, by involving them in the development of ad hoc measures (in addition to the existing psychological support measures available) to enable them to recharge their batteries. It is also important to support current and future professionals in their appropriation of digital tools for professional use.

Ability to Care for an Ill Loved One During the First COVID-19 Lockdown: Mediators of Informal Caregivers' Stress in Europe.

Informal caregivers are overlooked, healthcare actors. They are at particular risk of distress and suffer from poor mental health. This study aimed to investigate the perceived stress and modulating factors during the first COVID-19 lockdown in Europe, regardless of the illness that care recipients suffer from. Sociodemographic data, coping resources, and perceived stress level using the Perceived Stress Scale (PSS-10) questionnaire were assessed using a web-based survey in Switzerland, France, and Belgium with 232 informal caregivers. Mediation analyses were used to identify the factors that modulate stress. Higher perceived stress among informal caregivers was associated with a younger age for the care recipient, family relationship with the care recipient, cohabitation, and female sex of the informal caregiver. These associations were partially mediated by the fear of getting ill (age, cohabitation), the conviction that lockdowns had a negative impact on health (age, kinship), and the perceived deterioration of the care recipient's health (gender). The fear of losing the ability to cope with caregiving tasks due to an illness (COVID-19 and/or other) and the negative impact of the lockdown on care recipients' health, particularly on the mental health of young care recipients, increased the stress of informal caregivers. Our results emphasize the importance of informal caregiving support to prevent heightened stress in lockdown conditions, regardless of care recipient illness or kinship.

The impact of the early phase of the COVID-19 pandemic on mental-health services in Europe.

PURPOSE: The current COVID-19 pandemic confronts psychiatric patients and mental health services with unique and severe challenges. METHODS: In order to identify these trans-national challenges across Europe, an ad-hoc survey was conducted among 23 experts, each answering for one European or aligned country. RESULTS: A number of important themes and issues were raised for the impact of COVID-19 on mental health and mental health services, barriers to service provision and future consequences. A number of key issues were reported by colleagues across several jurisdictions, even though these were at different stages of their national epidemics. CONCLUSIONS: Based on these findings, we articulate some important learnings from the early stages of the COVID-19 European pandemic, and highlight key considerations for all countries' mental health services as the current pandemic develops and for future pandemics.

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.

Improving Pleasure and Motivation in Schizophrenia: A Randomized Controlled Clinical Trial.

BACKGROUND: Negative symptoms are frequent in patients with schizophrenia and are associated with marked impairments in social functioning. The efficacy of drug-based treatments and psychological interventions on primary negative symptoms remains limited. The Positive Emotions Programme for Schizophrenia (PEPS) is designed to improve pleasure and motivation in schizophrenia patients by targeting emotion regulation and cognitive skills relevant to apathy and anhedonia. The main hypothesis of this study is that patients who attend 8 one-hour sessions of PEPS and treatment as usual (TAU) will have lower total apathy-avolition and anhedonia-asociality composite scores on the Scale for the Assessment of Negative Symptoms (SANS) than patients who attend only TAU. METHODS: Eighty participants diagnosed with schizophrenia or schizoaffective disorder were randomized to receive either TAU or PEPS + TAU. The participants were assessed by independent evaluators before randomization (T0), in a post-test after 8 weeks of treatment (T1) and at a 6-month follow-up (T2). RESULTS: The post-test results and 6-month follow-up assessments according to an intention-to-treat analysis showed that the apathy and anhedonia composite scores on the SANS indicated statistically greater clinical improvements in PEPS participants than in non-PEPS participants. In the post-test, anhedonia but not apathy was significantly improved, thus favouring the PEPS condition. These results were sustained at the 6-month follow-up. CONCLUSIONS: PEPS is an effective intervention to reduce anhedonia in schizophrenia. PEPS is a short, easy-to-use, group-based, freely available intervention that is easy to implement in a variety of environments (ClinicalTrials.gov ID: NCT02593058).

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.

Internal validity of the French version of the Family Coping Questionnaire (FCQ): A confirmatory factor analysis.

Family members of patients with schizophrenia, especially when they assume caregivers' positions, experience difficulties to adapt to the situation. To gain insight into these caregivers' coping style is a challenge to decrease the stress of family members, and in this way, improve patient related outcome. The FCQ (Family Coping Questionnaire) is an adapted clinical assessment tool that focuses on specific ways to cope with dysfunction that characterize the psychotic pathology. The goal of this study was to provide validity evidence about the French version of the FCQ. Swiss and French family members of individuals suffering from schizophrenia (n = 204) responded to the FCQ. A confirmatory factor analysis (CFA) was applied estimating two models. The seven-factor model showed adequate fit to the data while the three-factor model fit was poor. This FCQ internal validation showed an adequate model fit with a French population including various family members (parents, siblings, etc.) of persons with enduring mental illness.

Feasibility and Accessibility of a Tailored Intervention for Informal Caregivers of People with Severe Psychiatric Disorders: a Pilot Study.

OBJECTIVES: This study aimed to assess the acceptability and feasibility of a new tailored intervention for informal caregivers: the Ensemble (Together) program. METHODS: An open pre-post within-subject comparison pilot study was conducted. Twenty-one informal caregivers completed the five-session Ensemble program. Two measurement tools were used: The Brief Symptom Inventory (BSI) and the Life Orientation Scale (LOT-R). RESULTS: The results showed that informal caregivers were in need of individual support and were ready to participate in the Ensemble program independent of the patient's diagnosis or stage of illness. The participants were very satisfied, and 95.4% completed the program. The preliminary results also showed that in five sessions, informal caregivers' Global Severity Index measured by the BSI and their optimism about their future (measured by the LOT-R) were significantly improved. CONCLUSION: This pilot study provided preliminary results concerning the feasibility and acceptability of the tailored Ensemble program and indicates the need for a randomized trial. The Ensemble program is appropriate for both the acute and chronic phases of disease. Individualized brief and useful interventions for informal caregivers may provide more positive outcomes in care.

Positive Emotions Program for Schizophrenia (PEPS): a pilot intervention to reduce anhedonia and apathy.

BACKGROUND: Recent literature has distinguished the negative symptoms associated with a diminished capacity to experience (apathy, anhedonia) from symptoms associated with a limited capacity for expression (emotional blunting, alogia). The apathy-anhedonia syndrome tends to be associated with a poorer prognosis than the symptoms related to diminished expression. The efficacy of drug-based treatments and psychological interventions for these symptoms in schizophrenia remains limited. There is a clear clinical need for new treatments. METHODS: This pilot study tested the feasibility of a program to reduce anhedonia and apathy in schizophrenia and assessed its impact on 37 participants meeting the ICD-10 criteria for schizophrenia or schizoaffective disorders. Participants were pre- and post-tested using the Scale for the Assessment of Negative Symptoms (SANS) and the Calgary Depression Scale for Schizophrenia (CDSS). They took part in eight sessions of the Positive Emotions Program for Schizophrenia (PEPS)--an intervention that teaches participants skills to help overcome defeatist thinking and to increase the anticipation and maintenance of positive emotions. RESULTS: Thirty-one participants completed the program; those who dropped out did not differ from completers. Participation in the program was accompanied by statistically significant reductions in the total scores for Avolition-Apathy and Anhedonia-Asociality on the SANS, with moderate effect sizes. Furthermore, there was a statistically significant reduction of depression on the CDSS, with a large effect size. Emotional blunting and alogia remain stable during the intervention. DISCUSSION: Findings indicate that PEPS is both a feasible intervention and is associated with an apparently specific reduction of anhedonia and apathy. However, these findings are limited by the absence of control group and the fact that the rater was not blind to the treatment objectives. CONCLUSIONS: PEPS is a promising intervention to improve anhedonia and apathy which need to be tested further in a controlled study. TRIAL REGISTRATION NUMBER: ISRCTN registry ISRCTN74048461, registered 18 may 2015.

[New developments in psychiatry]. / Psychiatrie.

In this review of recent therapeutic developments in psychiatry, we will report on three domains where new strategies have been proposed. First we will discuss the concept of neuroprotection in patients at "ultra high risk" to develop psychosis and the encouraging results of a randomised controlled trial comparing the effect of placebo and fish oil. We will then present the impact of metacognition programs which aim at adding some flexibility to thought processes used by patients with psychosis in order to reduce psychotic symptoms. We finally will report on a program of supported employment which was developed in order to help patients find an active place in society.

Safety-seeking behaviours and verbal auditory hallucinations in schizophrenia.

Verbal auditory hallucinations can have a strong impact on the social and professional functioning of individuals diagnosed with schizophrenia. The safety-seeking behaviours used to reduce the threat associated with voices play a significant role in explaining the functional consequences of auditory hallucinations. Nevertheless, these safety-seeking behaviours have been little studied. Twenty-eight patients with schizophrenia and verbal auditory hallucinations were recruited for this study. Hallucinations were evaluated using the Psychotic Symptom Rating Scale and the Belief About Voice Questionnaire and safety behaviours using a modified version of the Safety Behaviour Questionnaire. Our results show that the vast majority of patients relies on safety behaviours to reduce the threat associated with voices. This reliance on safety behaviours is mostly explained by beliefs about origin of voices the omnipotence attributed to hallucinations and the behavioural and emotional reactions to the voices. Safety-seeking behaviours play an important role in maintaining dysfunctional beliefs with respect to voices. They should be better targeted within the cognitive and behavioural therapies for auditory hallucinations.

Correlational study: illness representations and coping styles in caregivers for individuals with schizophrenia.

BACKGROUND: Caring for individuals with schizophrenia can create distress for caregivers which can, in turn, have a harmful impact on patient progress. There could be a better understanding of the connections between caregivers' representations of schizophrenia and coping styles. This study aims at exploring those connections. METHODS: This correlational descriptive study was conducted with 92 caregivers of individuals suffering from schizophrenia. The participants completed three questionnaires translated and validated in French: (a) a socio-demographic questionnaire, (b) the Illness Perception Questionnaire for Schizophrenia and (c) the Family Coping Questionnaire. RESULTS: Our results show that illness representations are slightly correlated with coping styles. More specifically, emotional representations are correlated to an emotion-focused coping style centred on coercion, avoidance and resignation. CONCLUSION: Our results are coherent with the Commonsense Model of Self-Regulation of Health and Illness and should enable to develop new interventions for caregivers.

French version validation of the psychotic symptom rating scales (PSYRATS) for outpatients with persistent psychotic symptoms.

BACKGROUND: Most scales that assess the presence and severity of psychotic symptoms often measure a broad range of experiences and behaviours, something that restricts the detailed measurement of specific symptoms such as delusions or hallucinations. The Psychotic Symptom Rating Scales (PSYRATS) is a clinical assessment tool that focuses on the detailed measurement of these core symptoms. The goal of this study was to examine the psychometric properties of the French version of the PSYRATS. METHODS: A sample of 103 outpatients suffering from schizophrenia or schizoaffective disorders and presenting persistent psychotic symptoms over the previous three months was assessed using the PSYRATS. Seventy-five sample participants were also assessed with the Positive And Negative Syndrome Scale (PANSS). RESULTS: ICCs were superior to .90 for all items of the PSYRATS. Factor analysis replicated the factorial structure of the original version of the delusions scale. Similar to previous replications, the factor structure of the hallucinations scale was partially replicated. Convergent validity indicated that some specific PSYRATS items do not correlate with the PANSS delusions or hallucinations. The distress items of the PSYRATS are negatively correlated with the grandiosity scale of the PANSS. CONCLUSIONS: The results of this study are limited by the relatively small sample size as well as the selection of participants with persistent symptoms. The French version of the PSYRATS partially replicates previously published results. Differences in factor structure of the hallucinations scale might be explained by greater variability of its elements. The future development of the scale should take into account the presence of grandiosity in order to better capture details of the psychotic experience.