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CONTEXT: To identify the characteristics of adolescent young carers (AYCs), studies in the literature have compared them with non-AYCs, but without considering that in the latter group, some face the illness of a relative whereas others do not. OBJECTIVES: The aims of the study were (1) to identify the characteristics of AYCs as compared with adolescents who are not young carers but are facing the illness/disability of a relative, or adolescents not facing the illness/disability of a relative, and (2) to identify factors associated with being a carer within adolescents facing a relative illness. METHODS: A total of 4000 high school students (grades 10-12, mainly aged 15-17 years, 568 identified as AYCs, 1200 as adolescents facing the illness/disability of a relative without being a carer and 2232 as adolescents not facing the illness/disability of a relative) completed a self-reported questionnaire assessing sociodemographic characteristics, illness/disability in the family, caregiving activities (MACA-YC18 and specific emotional support scale), quality of life (KIDSCREEN-10) and mental health (GHQ-12). Chi-square tests, ANOVAs and logistic regressions were performed. RESULTS: AYCs scored lower on the quality-of-life measure compared with adolescents not facing the illness/disability of a relative (p < .001) and had poorer mental health compared with adolescents facing the illness/disability of a relative without being a carer and adolescents not facing the illness/disability of a relative (p < .001). Logistic regressions showed that youth were more at risk to be an AYC when they were females (p < .001), when they had an extracurricular job (p < .001), spoke another language at home (p < .01), had siblings and were one of the oldest siblings (p < .001), and when the relative had a serious or chronic physical illness (p < .001) and lived with the youth (p < .001). CONCLUSIONS: These results highlight the importance of distinguishing AYCs, adolescents facing the illness/disability of a relative without being a carer and adolescents not facing the illness/disability of a relative to better describe AYCs, recognizing that as the level of care provided might change over time, adolescents facing the illness/disability of a relative without being a carer could become AYCs or inversely. The factors that emerged could be used by professionals to better identify AYCs.
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Cuidadores , Calidad de Vida , Femenino , Humanos , Adolescente , Masculino , Cuidadores/psicología , Salud Mental , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To explore how patients and relatives experience and talk together about their life with inflammatory arthritis. DESIGN: Qualitative research. SETTING: A convenience sample was used. Participants were recruited in seven rheumatology departments in France. PARTICIPANTS: Patients with rheumatoid arthritis or spondyloarthritis, agreeing to participate in the study with a relative, age at least 18 years. DATA COLLECTION AND ANALYSIS: Two psychologists conducted face-to-face interviews with 20 patient-relative dyads (40 individuals). A thematic analysis followed a general inductive approach. RESULTS: Saturation was reached after interviews with 20 dyads. The analysis revealed four main themes: (a) disease 'lived' together: a new role for the relative (providing help in physical tasks, emotional support, acting as a driving force, having a role in medical care) and communication around the disease (not focusing on the disease); (b) impact of the disease on the relationship; (c) social impact of the disease on the dyad (social isolation); (d) difficulties and needs of the relative (need to better know the disease). CONCLUSION: This study has highlighted the importance of recognizing the role of the relative in the management of inflammatory arthritis disease, especially when medical decisions are shared with professionals. A joint approach to treatment is a basis for coping with the disease. This approach supposes (a) discussions about relatives' new roles to clarify them, (b) patients' and relatives' communication skills and (c) a good understanding of each other, which can be improved by providing information on the disease and coping strategies for both the patient and the relative.
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Adaptación Psicológica , Artritis Reumatoide/psicología , Manejo de la Enfermedad , Familia/psicología , Pacientes/psicología , Actividades Cotidianas , Femenino , Francia , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Relaciones Profesional-Familia , Apoyo SocialRESUMEN
Importance: Keeping a diary for patients while they are in the intensive care unit (ICU) might reduce their posttraumatic stress disorder (PTSD) symptoms. Objectives: To assess the effect of an ICU diary on the psychological consequences of an ICU hospitalization. Design, Setting, and Participants: Assessor-blinded, multicenter, randomized clinical trial in 35 French ICUs from October 2015 to January 2017, with follow-up until July 2017. Among 2631 approached patients, 709 adult patients (with 1 family member each) who received mechanical ventilation within 48 hours after ICU admission for at least 2 days were eligible, 657 were randomized, and 339 were assessed 3 months after ICU discharge. Interventions: Patients in the intervention group (n = 355) had an ICU diary filled in by clinicians and family members. Patients in the control group (n = 354) had usual ICU care without an ICU diary. Main Outcomes and Measures: The primary outcome was significant PTSD symptoms, defined as an Impact Event Scale-Revised (IES-R) score greater than 22 (range, 0-88; a higher score indicates more severe symptoms), measured in patients 3 months after ICU discharge. Secondary outcomes, also measured at 3 months and compared between groups, included significant PTSD symptoms in family members; significant anxiety and depression symptoms in patients and family members, based on a Hospital Anxiety and Depression Scale score greater than 8 for each subscale (range, 0-42; higher scores indicate more severe symptoms; minimal clinically important difference, 2.5); and patient memories of the ICU stay, reported with the ICU memory tool. Results: Among 657 patients who were randomized (median [interquartile range] age, 62 [51-70] years; 126 women [37.2%]), 339 (51.6%) completed the trial. At 3 months, significant PTSD symptoms were reported by 49 of 164 patients (29.9%) in the intervention group vs 60 of 175 (34.3%) in the control group (risk difference, -4% [95% CI, -15% to 6%]; P = .39). The median (interquartile range) IES-R score was 12 (5-25) in the intervention group vs 13 (6-27) in the control group (difference, -1.47 [95% CI, -1.93 to 4.87]; P = .38). There were no significant differences in any of the 6 prespecified comparative secondary outcomes. Conclusions and Relevance: Among patients who received mechanical ventilation in the ICU, the use of an ICU diary filled in by clinicians and family members did not significantly reduce the number of patients who reported significant PTSD symptoms at 3 months. These findings do not support the use of ICU diaries for preventing PTSD symptoms. Trial Registration: ClinicalTrials.gov Identifier: NCT02519725.
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Cuidados Críticos/psicología , Unidades de Cuidados Intensivos , Respiración Artificial/psicología , Trastornos por Estrés Postraumático/prevención & control , Anciano , Familia/psicología , Femenino , Personal de Salud/psicología , Hospitalización , Humanos , Masculino , Persona de Mediana Edad , RegistrosRESUMEN
AIMS: The aim of this study was to explore the prevalence and characteristics of adolescent young carers in France, with an identification method based on the extent of caring activities including emotional support. DESIGN: Cross-sectional. METHODS: Between May 2018 and February 2021, 4037 adolescents (grades 10-12, mainly aged 15-17, 60.2% female) answered a self-reported questionnaire at school. The questionnaire assessed sociodemographic characteristics, illness/disability in the family, support provided by the adolescent (Multidimensional Assessment of Caring Activities, MACA-YC18, and a specific scale for emotional support), and quality of life (KIDSCREEN-10). RESULTS: Results showed that 42.5% of adolescents faced the illness/disability of a relative and 14.3% provided a high level of support and could be considered adolescent young carers. They were most commonly females caring for a parent. Adolescent young carers reported a lower quality of life than non carers. Results also highlighted differences in care and quality of life between adolescent young carers who shared the same household as their ill/disabled relative and those who did not, according to gender as well as type and perception of support provided. CONCLUSION: Identifying adolescent young carers is a challenge. Identification methods based on the extent of caring activities seem appropriate but not entirely satisfactory. Self-identification criteria also seems important. An international consensus on the best identification methods and tools should be proposed. In France, the prevalence of adolescent young carers is high. These results highlight the crucial need to enhance awareness about adolescent young carers in France in order to identify and support them through appropriate health services policy. WHAT PROBLEM DID THE STUDY ADDRESS?: Little is known about young carers in France and there is no prevalence study. However, it is difficult to know which methods and identification criteria to apply to assess the prevalence, because they differ between studies and have an impact on the prevalence observed in each country. WHAT WERE THE MAIN FINDINGS?: The prevalence of adolescent young carers in France is high with a rate of 14.3%. Among them, 74.9% were female, 74.2% lived in the same household as their ill/disabled relative and 70.2% were aware that they provided support. Female young carers or those sharing a household with their ill/disabled relative provided higher levels of caring activities and had a lower quality of life. Adolescent young carers who were aware they provided support were less likely to have a relative with a serious/chronic physical illness but were more likely to have a relative with a mental illness, be a carer for a sibling or a grandparent and share the same household. WHERE AND ON WHOM WILL THE RESEARCH HAVE IMPACT?: These results should enhance awareness about young carers in France. Health care and education professionals have a major role to play to identify and support young carers, but public policy has to sustain it. Thus, the high prevalence rates highlight the importance of this phenomenon and the need to be attentive to this hidden population. Results also suggest an international consensus should be proposed to identify young carers.
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Cuidadores , Adolescente , Estudios Transversales , Francia , Humanos , Prevalencia , Encuestas y CuestionariosRESUMEN
AIMS: To explore the concepts of empathy and stress in nurses working in haemodialysis units in France and their possible interactions. BACKGROUND: Nurses' work in haemodialysis is rather complex. It requires technical expertise, because of the peculiarity of the treatment, and emotional skills, to care for patients throughout a long-lasting therapy. Empathy is considered as a key in the concept of caring, which allows nurses to give appropriate answers to their patients' needs. In addition, nurses' work environment can generate stress. DESIGN: A qualitative descriptive design. METHOD: Nurses (N = 23) working in haemodialysis units were interviewed in three different sites in 2014. RESULTS: The analysis of nurses' speech emphasized a predominance of the cognitive attributes of empathy: understanding, communication, adjusted response (43%), and a special feature of the relationship due to the chronicity of the care (23%). The main stressors highlighted were time management (14%), emergencies (12%) and technical nature of the task (8%). Nurses' experience in haemodialysis seemed to be a modulating factor regarding empathy and stress. The main stressors highlighted were time management (14%), emergencies (12%) and technical nature of the task (8%). Nurses' experience in haemodialysis seemed to be a modulating factor regarding empathy and stress. CONCLUSION: The results showed the special features of nurses' work in haemodialysis and the need for further studies to investigate these concepts. The influence of stress on empathy needs to be explored more precisely, especially regarding nurses' experience and its impact on patients.
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Empatía , Rol de la Enfermera/psicología , Personal de Enfermería en Hospital/psicología , Diálisis Renal/enfermería , Estrés Psicológico , Adulto , Femenino , Francia , Humanos , Masculino , Persona de Mediana Edad , Relaciones Enfermero-Paciente , Investigación Cualitativa , Encuestas y CuestionariosRESUMEN
Few studies have investigated professionals' awareness of young carers (YCs). Therefore, the main aim of this study was to explore school professionals' awareness of YCs. The secondary aim was to compare professionals' responses according to their occupation. A total of 2658 professionals took part in this study by completing an online questionnaire. The results indicated that the mean for the perceived age for care beginning was 10.3 years old, with parents being perceived as the most frequent care recipient. The main caring activities reported were domestic chores, emotional support and sibling care, while care provided directly to the care recipient was perceived as less frequent. Many suggestions for improving the identification, referral and support of YCs were seen as relevant, but professionals were less supportive of suggestions for adjustments within schools. The key training needs centered around better identifying YCs and developing better knowledge of their difficulties. Differences were observed according to occupation, with administrative staff and teachers having less accurate perceptions than school counsellors as well as social and health professionals. This study shows that it can be difficult for school professionals to imagine a child providing care. Specific training, therefore, needs to be proposed according to school professionals' occupations.
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Cuidadores , Instituciones Académicas , Niño , Humanos , Encuestas y Cuestionarios , Personal de Salud/psicología , Actitud del Personal de SaludRESUMEN
ICU survivors may experience various long-term sequelae, recognized as Post-Intensive Care Syndrome, that includes psychiatric symptoms: anxiety, depression, and post-traumatic stress disorders symptoms (PTSD). While it was hypothesized that an ICU diary could help patients after discharge, improving their hospitalization memories and quality of life, it is unclear whether it may reduce psychiatric disorders, in particular PTSD. We performed a qualitative exploration of survivors' subjective experience of their ICU stay, their representations, memories, meaning-making of their experience and use of their ICU diary. Five participants (ICU survivors, 3 men and 2 women, who received a diary) were included in this study. We conducted non-directive interviews 6 months after discharge. These interviews were transcribed and analyzed using Interpretative Phenomenological Analysis. Major recurring themes of discourse included: (1) The nightmare of the ICU experience: from an impression of vagueness to dispossession, (2) The positive image of health-care workers during intensive care, (3) The place of the relatives and health-care workers' writings in the diary: either a support or a barrier, (4) The difficult return back home, and daily life after intensive care. Participant's representation of their ICU experience seemed to reflect the meaning they had given it through their own reflections and that of health-care workers in the diary. For some participant, the diary was associated to the pain and strangeness of the ICU experience; therefore, their recovery required them to take some distance with it. The ICU diary allowed participants to construct their illness narratives, and to become aware of the presence and support of health-care workers. The diary was also perceived as the witness of a period they wished to forget. Trial registration: NCT02519725.
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Calidad de Vida , Trastornos por Estrés Postraumático , Cuidados Críticos/métodos , Enfermedad Crítica/psicología , Femenino , Humanos , Unidades de Cuidados Intensivos , Masculino , Calidad de Vida/psicología , Trastornos por Estrés Postraumático/psicología , Sobrevivientes/psicologíaRESUMEN
Young carers (YCs) are children and adolescents who provide meaningful, regular support to a relative with a health problem. In France, only one programme exists to support them: the arts and respite care programme of the national association JADE. The aim of this study is to describe the profiles of YCs who had participated in this programme and to evaluate their expectations, opinions, and the evolution of their quality of life over the course of the programme. All YCs enrolled in the programme between 2017 and 2020 were invited to participate in the study. Upon arrival, the youths completed a self-report questionnaire addressing their sociodemographic and family situations, their caregiving activities, their quality of life, and their expectations for the programme. At the end of each week, a questionnaire evaluating their opinion of the programme and their quality of life was completed. A hundred and seventeen children participated (average age: 12; 71.8% girls). Most YCs provided support to a parent or sibling with a chronic somatic disease. The support mainly concerned doing domestic tasks and providing emotional support for the relative and was significantly higher among adolescents. Their expectations were mainly about getting respite and meeting other young people. Their levels of satisfaction were high and aligned with their expectations. Their quality of life increased significantly. French YCs in this programme had characteristics comparable to those observed internationally. The results underline the importance of respite and the benefits such a programme can bring to YCs.
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Cuidadores , Cuidados Intermitentes , Adolescente , Cuidadores/psicología , Niño , Enfermedad Crónica , Femenino , Humanos , Masculino , Calidad de Vida , Cuidados Intermitentes/psicología , Encuestas y CuestionariosRESUMEN
OBJECTIVES: To investigate patients' experience of ICU diaries 6 months after ICU discharge among survivors. This study was designed to add insight into a large randomized study, which found no benefit of the ICU diary to post-traumatic stress disorder among critically ill patients having received mechanical ventilation. DESIGN: A preplanned qualitative substudy of patients receiving an ICU diary written by ICU caregivers and families. Six months after ICU discharge, survivors were contacted by a psychologist for a telephone interview using a semi-directive guide. SETTING: Thirty-five French ICUs. PATIENTS: All ICU survivors having received an ICU diary. INTERVENTION: An ICU diary written by both ICU staff and families. MEASUREMENTS AND MAIN RESULTS: Among the 332 patients randomized in the intervention group (having had an ICU diary filled by both ICU staff and families), 191 (57.7%) were alive at 6 months and 101 of 191 (52.9%) participated in a telephone interview. They were (median [interquartile range]) 64 years old (53-70 yr old); 65 (64.4%) were men, and 79 (78.2%) were medical patients. Duration of ICU stay was 13 days (8-21 d). Three themes were derived from the thematic analysis: 1) reading the diary: between emotion and pain, 2) how the diary helped, and 3) the bittersweet representation of the diary. For half of the patients, the diary is a good memory of difficult times (55/101, 54.5%), others seem to be more ambivalent about it (28/101, 27.8%), and 37 of 101, 36.6% see it as a painful representation of a time to be forgotten. CONCLUSIONS: When reading their ICU diaries, ICU survivors experienced mixed emotions, related to family messages, medical caregiving, and to the severity of their illness. Patients described diaries as a help or a hindrance to recovery, depending on their wish to remember the period or move on from it.
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OBJECTIVES: To guide Therapeutic Patient Education (TPE) programs to improve patients' and spouses' perceived health, we aimed to analyze the effect of the spouse health state and patient-spouse relationship on functional impairment, mental health and self-efficacy of patients with RA or SpA. METHODS: In this observational cross-sectional study, inclusion criteria were age≥18years and diagnosis of RA or SpA. The outcome criteria were functional impairment and mental health measured by the Medical Outcomes Study Short-Form 12-item version (SF-12-MCS); mental health measured by the General Health Questionnaire (GHQ-12); and self-efficacy by the General Self-Efficacy Scale (GSE Scale). Caregiver-patient relationship was assessed by the Personal Assessment of Intimacy in Relationships (PAIR) questionnaire and the Dyadic Adjustment Scale (DAS); social support by the Social Support Questionnaire-6 and spousal burden by the Zarit questionnaire. RESULTS: A total of 88 patient-spouse couples were included. Patients were mostly female (n=68, 77%), with mean age 59 (SD 12.6) years; 69% had RA. On bivariate analyses, only spousal burden was associated with patients' functional impairment. Patients' mental health was associated with satisfaction with social support and the dyad relationship. Self-efficacy of patients was associated with spousal burden, satisfaction with social support, spousal anxiety/depression and the dyad relationship. On multivariate analysis, improved mental health and perceived self-efficacy of patients were associated with spousal satisfaction with social support (Beta=0.8, P=0.1 with GHQ-12) good communication in the couple (Beta=0.5, P=0.04 with SF-12-MCS and Beta=0.4, P=0.04 with GSE Scale) and low spousal-assessed burden (Beta=-0.2, P=0.003 with GSE Scale). CONCLUSION: This study has identified potential focus for intervention. It has highlighted the importance of recognizing the role of couple communication (experiencing an open and fluent exchange of ideas) in the patient's mental health and self-efficacy but also perceived satisfaction with social support of both members of the couple on the patient's mental health.
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Artritis , Esposos , Adaptación Psicológica , Anciano , Comunicación , Femenino , Humanos , Masculino , Persona de Mediana Edad , Apoyo SocialRESUMEN
Background: Studies interested in patients coping with a cardiac illness usually focus on children, teenagers, and adults above the age of 55. Apart from the field of congenital heart diseases, there is a general lack of literature regarding young adult cardiac patients (18-55 years old) who seem to cope with psychosocial issues. Therefore, the objective of this paper was to gather all the research carried out concerning the psychological experiences of young adult cardiac patients. Methods and Results: A comprehensive, systematic review was conducted on quantitative, qualitative, and mixed-method studies in PsycINFO, PubMed, ScienceDirect, and Cochrane Library databases. Out of the 10,747 articles found, 32 were included. While we aimed to include many cardiac diseases, coronary patients dominated the data. Five main themes emerged: emotional states (depression, anxiety, emotional distress, and stress), quality of life (health-related quality of life, physical functioning, and sexuality), adjusting to the medical environment (coping with the disease, health behavior change, financial barriers, and interactions with medical professionals), social life (social support and work), and identity (parenthood, new challenges, and new meanings). The results highlighted that their levels of depression, anxiety, stress, and quality of life were sometimes worse than in the general population and than in older and younger patients coping with a cardiac illness. Social isolation, identity changes, work, and parenthood were the specific challenges that this population had to face. Furthermore, young adult cardiac patients showed worse health behavior profiles than the general population and felt that they lacked information from professionals, especially regarding sexuality. Compared to men, women had worse psychosocial outcomes, especially regarding depression, stress, emotional distress, and quality of life. Conclusions: Young adult cardiac patients are to be considered with their own identity and challenges. They may be in need of specific interventions, some dedicated to women, and better communication is necessary with their families and professional caregivers so as to improve the patient's mental health, quality of life, coping skills, and adherence.
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BACKGROUND: One in 3 women with breast cancer will have a mastectomy and face the decision of whether to have breast reconstruction (BR). This decision is shared by the women and their physician, as well as discussed with her partner. OBJECTIVE: This study aimed to understand the decision-making process of BR through a lexical analysis of the women and their partners' discourse. A secondary aim was to identify the differences between the couples when the woman had, or did not have, BR. METHODS: We conducted semistructured interviews with 9 women, and their partners, who underwent a mastectomy after a first episode of breast cancer. A lexical analysis using IRaMuTeQ software was carried out. RESULTS: The analysis yielded 3 classes, each one being more represented by one of the different BR categories. Class 1 contained words reflecting a preoccupation with body modification. Class 2 was related to the surgery and its consequences. Words contained in class 3 were about the couples' issues regarding surgeries, treatments, and medical care. The question of temporality emerged particularly in classes 2 and 3. CONCLUSIONS: This study underlines the differences in the discourse of couples when talking about BR decision-making. Furthermore, it shows the importance of giving women time to think about BR and discuss its issues. IMPLICATION FOR PRACTICE: Decisions about BR are difficult to make and should always be discussed between the women and health professionals, as BR is not always possible or desired by women. Partners need to be included in treatment decision-making.
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Neoplasias de la Mama/psicología , Neoplasias de la Mama/cirugía , Toma de Decisiones , Mamoplastia/psicología , Mamoplastia/estadística & datos numéricos , Mastectomía/psicología , Parejas Sexuales/psicología , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
PURPOSE: The main aim of patient education is to maintain or improve quality of life. It is mostly focused on patients even if families might be included. The aim of this study was to explore patients' and relatives' perceptions and experiences about the role of relatives in disease management in chronic inflammatory arthritis in order to provide insight into how patient education programs might include relatives. METHODS: Individual semi-structured interviews were conducted with 20 patients (13 with polyarthritis; 7 with spondyloarthritis) and one of their relatives (N=40). A thematic analysis following an inductive approach was carried out using the QDA-Miner Software (inter-coder agreement 0.7). RESULTS: The analysis revealed three relevant themes. The first was their perception of relatives' general roles, which included technical skills, knowledge about the disease and interpersonal skills. The other two themes dealt with their specific relationship: the dyad relationship (including the usual relationship and in the context of the disease) and the help relationship (including practical assistance and emotional help). CONCLUSION: The results show the wide-ranging role of relatives in practical and emotional support, the complexity of patient-relative interactions regarding requests for help, their relationship and ability to share difficulties. This study gives indications about how to include relatives in TPE programs and emphasizes the importance of developing interventions for patient-relative dyads regarding the practical and emotional management of the disease, as well as interactions concerning help. Those interventions should enhance patients and relatives' quality of life.
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OBJECTIVES: Most people deal with intrusive life events such as cancer and the care trajectory together with their intimate partners. To our knowledge, no research has studied the involvement of the partner in the decision-making process regarding breast reconstruction (BR) after cancer. This study aimed to gain a better understanding of the couples' decision-making process for BR in the cancer context and particularly to investigate the partners' involvement in this process. METHOD: Eighteen participants (nine women who underwent a mastectomy following a first breast cancer and their intimate partners) took part in this study. We conducted semidirective interviews, and a general inductive approach was chosen to capture the representations of the couples. RESULTS: The women in the sample were aged between 33 and 66 years (M = 54, SD = 7.5) and their partner between 40 and 76 years (M = 59, SD = 11.6). The duration of their intimate relationship was on average 18 years (SD = 10.4; minimum = 4; maximum = 33). The analysis revealed 11 major themes. The two most salient ones were 'external influence' and 'implication of the partner'. The exploration of the subthemes revealed that the decision-making process is often reported as an interrelated experience by the couples and as a dyadic stressor. The partner's role is depicted as consultative and mostly supportive. CONCLUSION: These results provide new insights on the involvement of the partner in decision-making. Thus, it now seems crucial to develop a prospective study, which will help understand the progression of the decision-making process over time. Statement of contribution What is already known on this subject? Most people deal with intrusive life events such as cancer and the care trajectory together with their intimate partners. Shared decision-making between patients and physicians is now the 'gold standard' in Western Europe and the United States. However, in the context of breast reconstruction (BR) after cancer, factors guiding the decision-making process for BR, especially the potential involvement of the partner, are not very well understood. What does this study add? Provides a qualitative insight on the specific nature of heterosexual couples' representations regarding the decision-making process for breast reconstruction after cancer. Reveals that the decision-making process is often reported as an interrelated experience by the couples and as a dyadic stressor. Underlines the consultative function of partners with women engaged in breast reconstruction.
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Neoplasias de la Mama/cirugía , Toma de Decisiones , Heterosexualidad/psicología , Mamoplastia/psicología , Mastectomía/psicología , Esposos/psicología , Adulto , Anciano , Neoplasias de la Mama/psicología , Europa (Continente) , Composición Familiar , Femenino , Humanos , Mamoplastia/estadística & datos numéricos , Persona de Mediana Edad , Estudios Prospectivos , Parejas Sexuales , Esposos/estadística & datos numéricos , TiempoRESUMEN
BACKGROUND: Post-intensive care syndrome includes the multiple consequences of an intensive care unit (ICU) stay for patients and families. It has become a new challenge for intensivists. Prevention programs have been disappointing, except for ICU diaries, which report the patient's story in the ICU. However, the effectiveness of ICU diaries for patients and families is still controversial, as the interpretation of the results of previous studies was open to criticism hampering an expanded use of the diary. The primary objective of the study is to evaluate the post-traumatic stress syndrome in patients. The secondary objectives are to evaluate the post-traumatic stress syndrome in families, anxiety and depression symptoms in patients and families, and the recollected memories of patients. Endpoints will be evaluated 3 months after ICU discharge or death. METHODS: A prospective, multicenter, randomized, assessor-blind comparative study of the effect of an ICU diary on patients and families. We will compare two groups: one group with an ICU diary written by staff and family and given to the patient at ICU discharge or to the family in case of death, and a control group without any ICU diary. Each of the 35 participating centers will include 20 patients having at least one family member who will likely visit the patient during their ICU stay. Patients must be ventilated within 48 h after ICU admission and not have any previous chronic neurologic or acute condition responsible for cognitive impairments that would hamper their participation in a phone interview. Three months after ICU discharge or death of the patient, a psychologist will contact the patient and family by phone. Post-traumatic stress syndrome will be evaluated using the Impact of Events Scale-Revised questionnaire, anxiety and depression symptoms using the Hospital Anxiety and Depression Scale questionnaire, both in patients and families, and memory recollection using the ICU Memory Tool Questionnaire in patients. The content of a randomized sample of diaries of each center will be analyzed using a grid. An interview of the patients in the intervention arm will be conducted 6 months after ICU discharge to analyze in depth how they use the diary. DISCUSSION: This study will provide new insights on the impact of ICU diaries on post-traumatic stress disorders in patients and families after an ICU stay. TRIAL REGISTRATION: ClinicalTrial.gov, ID: NCT02519725 . Registered on 13 July 2015.