"Sustaining the burden". A qualitative study on the emotional impact and social functioning of family caregivers of patients with psychosis.

Evidence shows that caring for a family member with a psychotic disorder generates a significant emotional impact and repercussions on social functioning. However, this caregiving experience can be influenced by cultural factors. The aim of this study is to explore the experience and perception of a group of family caregivers of patients with psychotic disorders of different durations regarding the emotional and social functioning repercussions of caregiving on them in Andalusia. Three focus groups (28 participants) were conducted. Data were subject to a thematic analysis. Three themes emerged from the data: 1) Emotional invasion; 2) Disruption in the caregiver's life project; and 3) Changes in the family system. Participants reported experiencing sadness, fear, overwhelm, hopelessness, and uncertainty. Caregivers' accounts reflected an interruption of their daily tasks, as well as the need to reformulate plans or goals outside the family life that require long-term commitment, such as professional development or even their residence. The narratives indicated an impact on all roles within the family system, particularly for the mother. The results are consistent with existing research. Healthcare professionals and programs should take into account the costs associated with caregiving in order to minimize them, given the impact it has on both the patient's and the caregivers' health.

Use of the ADAPTE method to develop a clinical guideline for the improvement of psychoses and schizophrenia care: Example of involvement and participation of patients and family caregivers.

INTRODUCTION: The aim of this study is to analyse different ways of participation during the development of a clinical guideline to improve the early detection of psychosis and to deploy a comprehensive treatment plan to improve prognosis and social integration. MATERIALS AND METHOD: The clinical guideline was developed using the ADAPTE method with the participation of 40 authors and 80 external reviewers. The process was divided into three major phases: set up, adaptation and finalization. During adaptation and completion, a total of 44 patients and 18 family caregivers were involved. RESULTS AND CONCLUSIONS: The different roles assumed by the patients and their family caregivers were described, depending on the panel in which they participated, with diverse grades of complexity: a user as author, integration of the results of qualitative research with the participation of local users and family caregivers, 13 users as individual external reviewers and the participation of users and caregiver organizations in the external review. In the guideline, contributions from patients during the qualitative research were included in an innovative way, placing them just behind the recommendations. On the other hand, the results of the family caregivers' study were included in a specific area of uncertainty. Further, the expressed point of view was considered as the collective demands of users and family caregivers' organizations in the cost-benefit analysis made by the organizing committee. There were diverse ways to conduct direct patient participation during the guideline development, ensuring that their individual experiences contributed significantly to the final version.

"It's That They Treated Me Like an Object": A Qualitative Study on the Participation of People Diagnosed with Psychotic Disorders in Their Health Care.

The mental health recovery model is based on shared decision making, in which patients' preferences and perceptions of the care received are taken into account. However, persons with psychosis usually have very few opportunities to participate in this process. The present study explores the experiences and perceptions of a group of patients with psychosis-in some cases longstanding, in others more recently diagnosed-concerning their participation in the decisions taken about the approach to their condition and about the attention received from healthcare professionals and services. For this purpose, we performed a qualitative analysis of the outcomes derived from five focus groups and six in-depth interviews (36 participants). Two major themes, with five sub-themes, were identified: shared decision-making (drug-centred approach, negotiation process, and lack of information) and the care environment and styles of clinical practice as determinants (aggressive versus person-centred environments, and styles of professional practice). The main conclusions drawn are that users want to participate more in decision making, they want to be offered a range of psychosocial options from the outset and that their treatment should be based on accessibility, humanity and respect. These findings are in line with the guidelines for clinical practice and should be taken into account in the design of care programmes and the organisation of services for persons with psychosis.

'I do not know where it comes from, I am suspicious of some childhood trauma' association of trauma with psychosis according to the experience of those affected.

Background: Trauma-related symptoms are often experienced after a first psychotic episode. Objective: In this study, we conduct a qualitative analysis of referred traumatic experiences of outpatients diagnosed with psychotic disorders. Method: Focus groups were formed and in-depth interviews conducted with 30 participants, focusing on their experience with the disorder and the health care received. Given the frequency with which trauma and psychosis have been associated in the scientific literature, the nature of this relation is addressed as a secondary objective, via a qualitative analysis. Results: Analysis revealed two main themes in the patients' discourse. On many occasions, traumatic experiences were related to the development of the disorder. Although most participants referred to traumatic experiences during childhood, episodes during adult life were also reported, which may have triggered the disorder. The second theme was that of the interlocking relationship between the psychotic experience and certain coercive practices undergone during the provision of health care for psychosis, and the traumatic effects thus generated. Conclusions: The participants considered both themes to be highly important. Accordingly, these issues should be carefully assessed and managed in order to provide appropriate person-centred care.

Antecedentes: Los síntomas relacionados con el trauma a menudo se experimentan después de un primer episodio psicótico.Objetivo: En este estudio, realizamos un análisis cualitativo de experiencias traumáticas de pacientes ambulatorios diagnosticados con trastornos psicóticos.Método: Se conformaron grupos focales y se realizaron entrevistas en profundidad a 30 participantes, enfocándose en su experiencia con el trastorno y la atención médica recibida. Dada la frecuencia con la que el trauma y la psicosis se han asociado en la literatura científica, la naturaleza de esta relación se aborda como un objetivo secundario, a través de un análisis cualitativo.Resultados: El análisis reveló dos temas principales en el discurso de los pacientes. En muchas ocasiones, las experiencias traumáticas se relacionaron con el desarrollo del trastorno. Aunque la mayoría de los participantes se refirieron a experiencias traumáticas durante la infancia, también se informaron episodios durante la vida adulta, los que pueden haber desencadenado el trastorno. El segundo tema fue el de la relación entrelazada entre la experiencia psicótica y ciertas prácticas coercitivas sufridas durante la prestación de atención médica para la psicosis, y los efectos traumáticos generados por ésta.Conclusiones: Los participantes consideraron que ambos temas eran de gran importancia. En consecuencia, estas situaciones deben evaluarse y gestionarse cuidadosamente para proporcionar una atención adecuada centrada en la persona.