Actions taken and barriers encountered by professionals working with adults with intellectual disabilities who experience grief: a qualitative approach.

Experience of grief has increased among people with intellectual disability because of their longer life expectancy. Professionals supporting this population are often critical of the lack of adequate tools for dealing with this situation. The objective of this study was to identify the strategies and barriers that these professionals are confronted with when dealing people with intellectual disability who are going through the grieving process. A qualitative study was conducted involving 20 professionals working with people with intellectual disability. Four themes were extracted using thematic analysis: Exclusion of clients from end-of-life and grief processes, Strategies to support the client's grief process, Emotional and personal difficulties faced by the professionals, and Coping and regulation of the professional's grief process. Barriers identified by these professionals include not having the specific skills to support clients in their grief and the emotional impact of the death of a client.

Family bereavement and organ donation in Spain: a mixed method, prospective cohort study protocol.

INTRODUCTION: There is a discrepancy in the literature as to whether authorising or refusing the recovery of organs for transplantation is of direct benefit to families in their subsequent grieving process. This study aims to explore the impact of the family interview to pose the option of posthumous donation and the decision to authorise or refuse organ recovery on the grieving process of potential donors' relatives. METHODS AND ANALYSIS: A protocol for mixed methods, prospective cohort longitudinal study is proposed. Researchers do not randomly assign participants to groups. Instead, participants are considered to belong to one of three groups based on factors related to their experiences at the hospital. In this regard, families in G1, G2 and G3 would be those who authorised organ donation, declined organ donation or were not asked about organ donation, respectively. Their grieving process is monitored at three points in time: 1 month after the patient's death, when a semistructured interview focused on the lived experience during the donation process is carried out, 3 months and 9 months after the death. At the second and third time points, relatives' grieving process is assessed using six psychometric tests: State-Trait Anxiety Inventory, Beck Depression Inventory-II, Inventory of Complicated Grief, The Impact of Event Scale: Revised, Posttraumatic Growth Inventory and Connor-Davidson Resilience Scale. Descriptive statistics (means, SDs and frequencies) are computed for each group and time point. Through a series of regression models, differences between groups in the evolution of bereavement are estimated. Additionally, qualitative analyses of the semistructured interviews are conducted using the ATLAS.ti software. ETHICS AND DISSEMINATION: This study involves human participants and was approved by Comité Coordinador de Ética de la Investigación Biomédica de Andalucía (CCEIBA) ID:1052-N-21. The results will be disseminated at congresses and ordinary academic forums. Participants gave informed consent to participate in the study before taking part.

Intervención psicológica para el duelo dirigida a cuidadores familiares de adultos con discapacidad intelectual / Psychological intervention for bereavement aimed at family caregivers of adults with intellectual disabilities

El objetivo de este estudio fue adaptar y aportar datos preliminares de la eficacia de una intervención psicológica para cuidadores familiares de adultos con discapacidad intelectual, con el fin de proporcionarles recursos de afrontamiento para sobrellevar su rol de cuidador y reducir la sobrecarga psicológica y el dolor que conlleva el diagnóstico. Participaron 24 cuidadores, de los cuales 14 fueron asignados a un grupo intervención (GI) y 10 a un grupo control (GC) mediante una aleatorización simple. Se midieron variables de sobrecarga, salud mental y sentimientos de duelo derivados del diagnóstico. Se utilizaron modelos lineales de medidas repetidas para evaluar el efecto del programa. Se encontraron diferencias estadísticamente significativas (p< 0,05) en las variables de dolor emocional, aceptación de la pérdida y en la experiencia actual del duelo, mostrando el GI una mejora tras la intervención. Como conclusión, es necesario que este tipo de programas se impartan de forma temprana en estos cuidadores con el fin de evitar el duelo patológico y crónico en el que terminan desembocando frecuentemente. (AU)

Validity of the Computerized Battery for Neuropsychological Evaluation of Children (BENCI) in Spanish Children: Preliminary Results.

Study of the neurodevelopment of children is vital to promote good quality of life during childhood. Few batteries showing adequate reliability and validity indices are available to evaluate the different neuropsychological domains. The objective of this study was to obtain initial evidence on the validity of the Computerized Battery for Neuropsychological Evaluation of Children (BENCI) in a Spanish population. To assess the validity of the BENCI battery and other measures of task switching, abstract reasoning, linguistic abilities, processing speed, and attention were used. The sample was composed of a total of 73 children aged 9, 10, and 11 years. Significant differences among age groups were observed in the domains of sustained attention, memory, and executive function. In addition, the BENCI subtests showed statistically significant correlations with the other neuropsychological tools. Further research is warranted on the relationship of the BENCI with other tests in wider age groups and to assess the factorial structure of the scale and the reliability values of the subtests. In conclusion, this study seems to indicate that the Spanish version of the BENCI has promising validity to be used for evaluating the main neuropsychological domains in children.

Needs and Support Perceived by Women for Coping with the Experience of Intimate Partner Violence in Andalusia (Spain): A Qualitative Study.

There is a need to improve psychological interventions in women experiencing intimate partner violence (IPV) and reduce its long-term sequelae. The objective of this qualitative study was to explore the needs of female IPV survivors, the support they receive, and their strategies for coping with this experience over the long term. During 2017, 53 female IPV survivors participated in the study, of whom 38 (71.7%) were recruited from women's associations against gender violence from three Andalusia provinces (Southern Spain). In a semi-structured interview, the women responded to four open-ended questions about the effects of IPV on their life and how they coped with this situation. Four main themes were identified: (1) changes after the experience, (2) support during recovery, (3) perceived needs and obstacles, and (4) current situation. The survivors considered formal and informal social support to be critical to their recovery and emotional well-being. They also highlighted the need for continuity in support programs and for specialist interventions to address long-term psychological sequelae. These findings reinforce the need for psychological programs more tailored to the needs of these women.

The Importance of Spirituality for Women Facing Breast Cancer Diagnosis: A Qualitative Study.

Breast cancer remains significantly distressing and produces profound changes in women's lives. Spirituality is an important resource at the time of diagnosis and treatment decisions. This qualitative study aimed to explore the spiritual experience of women diagnosed with breast cancer and the considerations of spirituality in health care using the existential phenomenology approach. The sampling procedure was intentional, based on the study's exclusion and inclusion criteria. Forty women participated in individual interviews. The research was conducted in the outpatient clinic of a reference federal university hospital in South-Eastern Brazil. Throughout the research process, ethical principles were carefully followed. Five themes were identified: (1) meaning of spirituality-source of spiritual strength, (2) well-being in the relationship with God, (3) well-being in religious fellowship, (4) values and purpose of life-meaning in life, and (5) spirituality as a foundation to continue. Respect for patient's spiritual values was recognised as a fundamental principle in health care. Spirituality was revealed as a source of support during the complex process of being diagnosed with breast cancer. Thus, health care professionals that value and encourage spirituality are needed, favouring better patient response to the diagnosis.

Differences in Neuropsychological Performance between Refugee and Non-Refugee Children in Palestine.

Neuropsychological studies on refugee children are scarce, but there are even less in the case of Palestinian children. This work aims to study the neuropsychological performance of Palestinian refugee children in Palestine compared to other Palestinian children living outside refugee camps. A comprehensive Neuropsychological battery was administrated to 584 Palestinian school children (464 refugees and 120 non-refugees) aged 6, 7, and 8 years old. Results showed that non-refugee children outperformed refugee children in sustained attention, verbal comprehension, verbal memory, and visual memory. This study is the first to have performed a comprehensive neuropsychological assessment, based on a standardized and validated battery with the Palestinian refugee children. It supports professionals in their evaluation of neurodevelopment and neuropsychological alterations in refugee and non-refugee children in Palestine.

Intervention Program to Improve Grief-Related Symptoms in Caregivers of Patients Diagnosed With Dementia.

The objectives of the present study were to adapt a grief intervention program to family caregivers of patients with dementia, and assess its effectiveness in improving the symptoms of grief and other health-related variables. The intervention was based on Shear and Bloom's grief intervention program, with the necessary adaptations for use in the grieving process for a family member's illness. A total of 52 family caregivers of individuals with dementia participated. They were evaluated using a battery of self-report measures assessing grief, overload, resilience, post-traumatic growth, experiential avoidance, health-related quality of life, and benefits of care. The results suggest that the program is effective in improving grief symptoms, caregiver burden, resilience, post-traumatic growth, and quality of life of family caregivers. It is necessary to create and implement interventions targeting caregivers' feelings and manifestations of ambiguous grief, because there is a lack of programs providing an efficient solution for the mental and physical health of caregivers, and because of the human and socioeconomic cost involved in neglecting this group.

Cultural Bias in Intelligence Assessment Using a Culture-Free Test in Moroccan Children.

OBJECTIVE: Previous research has shown that cognitive tests can lead to misclassification when applying non-representative norms to measure cognitive performance. The objective of this study was to investigate whether this misclassification also occurs with a non-verbal so-called "culture-free" intelligence test administered to different age groups. METHOD: The intelligence of a sample of healthy Moroccan children (N = 147) ages 7, 9, and 11 was assessed using the Coloured Raven's Progressive Matrices (CPM). Raw scores were used to study age differences, as well as misclassifications when applying the norms of three countries culturally different from Morocco (United Kingdom, Spain, and Oman). RESULTS: Intelligence performance was not within the normal range when non-representative norms were applied to the Moroccan raw scores. Misclassifications accounted for a large percentage of the participants that supposedly displayed intelligence deficits, especially when applying the British norms. Up to 15.68% of the healthy children fell within the "intellectually impaired" range, and up to 62.5% fell "below average," with these percentages especially higher at older ages. CONCLUSIONS: Our findings confirm that "culture-free" tests should be adapted to each culture and applied together with their culture's specific norms to prevent misclassification and allow for a better, unbiased neuropsychological assessment.

A New Instrument to Assess Children's Understanding of Death: Psychometrical Properties of the EsCoMu Scale in a Sample of Spanish Children.

The acquisition of the death concept in children may influence how these children cope with the losses that they will confront throughout their lives. At the present time, there is a lack of psychometric instruments in Spanish-speaking countries in order to evaluate the components of the death concept in children. The aim of this study was to create and validate a scale (EsCoMu-Escala sobre el Concepto de Muerte) in order to provide insight about the concept of death in children. The sample was formed by 358 children from ages 6 to 13 years. The final EsCoMu version has 27 items which serve to evaluate universality, irreversibility, non-functionality and causality. The results of the confirmatory factor analysis show an adequate fit index for the four dimensions model, reliability (α = 83) and validity evidence, specifically based on the children's age. In conclusion, EsCoMu is an instrument that shows adequate reliability and validity indices in order to assess the concept of death and its four components among children. Due to its simplicity, this instrument can be very useful if applied to the field of neurodevelopmental disorders.

Post-Traumatic Growth in Professionals Caring for People with Intellectual Disabilities during COVID-19: A Psychological Intervention.

BACKGROUND: Health professionals present a greater vulnerability to the effects of COVID-19 on their mental health, especially those who work with vulnerable groups such as those who suffer from intellectual disability (ID). The objective of the present research was to develop and verify the effectiveness of a psychological intervention for professionals in the field of ID to improve their mental health during this health crisis. METHODS: A total of 32 professionals participated. The variables measured were: post-traumatic growth, mental health, burnout, coping strategies, resilience, life satisfaction, optimism, and cognitive and affective empathy. RESULTS: The results revealed statistically significant differences in the post-traumatic growth variable. In the rest of the variables (mental health, burnout, coping strategies, resilience, vital satisfaction, optimism, and empathy), no significant differences between groups were found. CONCLUSIONS: An increase in the levels of post-traumatic growth was observed in the intervention group after a brief online psychological intervention. However, given the small sample size, these results should be taken with caution. Institutions should foster and promote interventions aimed at reducing the high emotional impact produced by COVID-19 in professionals that care for people diagnosed with ID.

Feeling of grief and loss in parental caregivers of adults diagnosed with intellectual disability.

BACKGROUND: The diagnosis of intellectual disability in children can produce complex grief-related feelings in their parents. Previous studies have focused on the moment of the diagnosis or the early life of the children, and little research has been conducted on their feelings of grief in adulthood. The objective was to analyse the process of grief/loss in parents of adult offspring with intellectual disability. METHOD: The intentional sampling included sixteen parents who responded to semi-structured interviews. A qualitative study was conducted based on grounded theory. RESULTS: Five categories were identified: "Reception of the diagnosis", "Emotional bonds with the child", "Experience of loss and feelings in response to intellectual disability diagnosis", "Recurrent grief" and "Coping strategies". CONCLUSIONS: Recurring feelings of loss experienced by parents in relation to their child's diagnosis persist over time. Specialized emotional interventions are needed to help parents to reduce the intensity of their feelings of grief.

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study.

Background: Previous studies have confirmed that parenting a child diagnosed with an intellectual disability (ID) can negatively affect the parents' quality of life in several dimensions. However, fewer have assessed its impact years after the initial diagnosis. The objective of this work was to carry out an in-depth analysis of the current quality of life and concerns of both mothers and fathers of adults diagnosed with ID, having as a reference the moment of the diagnosis. Methods: 16 parents of adult children with ID were evaluated using a semi-structured interview format. A thematic qualitative analysis was carried out by employing ATLAS.ti software. Results: The results suggested that both the emotional and physical well-being of parents, as well as their interpersonal relationships, had declined. In addition, the multiple life changes that had occurred over the time considered in this study, as well as day-to-day worries, had prevented improvements in their quality of life. Conclusions: Several dimensions of the parents' quality of life were affected years after a child is diagnosed with ID. These included poor physical and psychological health, economic difficulties, lack of social and family support, and lack of time for self-care.

Increased Amygdala Activations during the Emotional Experience of Death-Related Pictures in Complicated Grief: An fMRI Study.

Complicated grief (CG) is associated with alterations in various components of emotional processing. The main aim of this study was to identify brain activations in individuals diagnosed with CG while they were observing positive, negative, and death-related pictures. The participants included 19 individuals with CG and 19 healthy non-bereaved (NB) individuals. Functional magnetic resonance imaging (fMRI) scans were obtained during an emotional experience task. The perception of death-related pictures differed between the CG group and the NB group, with a greater activation in the former of the amygdala, putamen, hypothalamus, middle frontal gyrus, and anterior cingulate cortex. Amygdala and putamen activations were significantly correlated with Texas Revised Inventory of Grief scores in the CG group, suggesting that the higher level of grief in this group was associated with a greater activation in both brain areas while watching death-related pictures. A significant interaction between image type and group was observed in the amygdala, midbrain, periaqueductal gray, cerebellum, and hippocampus, largely driven by the greater activation of these areas in the CG group when watching death-related pictures and the lower activation when watching positive-valence pictures. In this study, individuals with CG showed significantly distinct brain activations in response to different emotional images.

Influence of Socio-Economic Status on Psychopathology in Ecuadorian Children.

The socioeconomic status (SES) of parents has been reported to have a crucial impact on emotional competence in childhood. However, studies have largely been carried out in developed countries and in children in a specific age range, and it is not clear whether the effect of the SES of parents varies by age. The objective of this study was to investigate the psychopathological profile (including externalizing and internalizing problems) of children aged 7, 9, and 11 years old with low SES in a developing country (Ecuador). The study included 274 children (139 boys and 135 girls), who were divided between medium-SES (n = 133) and low-SES (n = 141) groups. Data were gathered on socioeconomic and anthropometric variables of the children, and the parents completed the Child Behavior Check-List (CBCL). In comparison to the medium-SES group, children in the low-SES group obtained higher scores for internalizing and externalizing symptoms and for total problems, and they obtained lower scores for social competence skills. The housing risk index and school competence were the two main predictors of internalizing and externalizing problems in this population.

Grief Experiences in Family Caregivers of Children with Autism Spectrum Disorder (ASD).

The main objective of this study was to analyse the experience of grief and feelings of loss in family caregivers of children diagnosed with autism spectrum disorder (ASD), as well as the perceived overload from taking on the primary caregiver role. Twenty family caregivers of children with ASD participated. The family members were assessed using an ad-hoc semi-structured interview that addressed the families' reactions to the diagnosis, implications for daily functioning, and concerns for the immediate and long-term future of their relatives with ASD. The results indicate that family caregivers of children with ASD endure intense and continuous sorrow and grief due to the impact that having and caring for a child with these characteristics has on all aspects of their lives. These data highlight the importance of creating support and intervention programmes and services focused on the feelings and manifestations of ambiguous grief that occur in these family members, in order to improve their well-being and quality of life and reduce caregiver role overload.

Living With an Intestinal Stoma: A Qualitative Systematic Review.

The main aim of this article is to explore the experiences and life situations of people living with intestinal stomas. Previous studies indicated the need to investigate the concerns of ostomy patients and how these concerns can affect their quality of life and their approaches to the comprehensive conceptualization of the bodily changes. A qualitative systematic review and metasynthesis design was carried out by using the main scientific databases. Original articles from 2002 to 2015 were selected based on their qualitative methodology. Methodological quality was evaluated using the Critical Appraisal Skills Program. The findings were synthesized using the metasynthesis procedure of Sandelowski. The final number of articles included was 95 and 1,982 participants. Regarding the metasummary, the data generated 191 thematic statements that were organized into eight categories. The findings support an explanatory model of the experience of people with ostomy based on three aspects: Acceptance, Adaptation, and Autonomy.

Determinantes sociales de la salud. Estatus socioeconómico, neurodesarrollo y funciones ejecutivas en la infancia / Social determinants of health. Socioeconomic status, neurodevelopment and executive functions in childhood

Objetivo principal: El objetivo principal de esta revisión ha sido analizar las relaciones entre el estatus socioeconómico (SES) y el desarrollo de las funciones ejecutivas (FE) durante la infancia, partiendo del conocimiento de que los niveles bajos de SES afectan al neurodesarrollo. Metodología: Se ha realizado una búsqueda en diferentes bases de datos seleccionándose 15 artículos de interés. Resultados principales: Tras su lectura, se ha encontrado una clara relación entre SES y FE. Conclusión principal: Se ha apreciado que niveles bajos de SES afectan de forma negativa al desarrollo de las FE. Asimismo, en los estudios se han tenido en cuenta qué variables del SES podrían influir en esta relación, qué componentes de las FE se ven afectadas y qué factores pueden servir como mediadores

Objective: The main purpose of this review has been to analyse the relationship between socioeconomic status (SES) and the development of the executive functions (EF) during childhood, based on the knowledge that low levels of SES affect neurodevelopment. Methods: A search in different data bases has been made shortlisting 15 articles of interest. Results: After their analysis, a clear relationship has been found between SES and EF. Conclusions: It has been noted that low levels of SES negatively affect the development of the EF. Also, research has taken into account which SES variables could influence this relationship, which EF components can be affected, and which factors can be used as mediators

Reliability and validity of the Arabic version of the computerized Battery for Neuropsychological Evaluation of Children (BENCI).

Batería de Evaluación Neuropsicológica Infantil (BENCI) is a computerized battery for the neuropsychological evaluation of children. This battery has been used in different studies to evaluate neuropsychological functions and neurodevelopment in children. The objective of this study is to test the validity and reliability of the first Arabic version of the BENCI on an Arabic population where neuropsychological tests are very scarce. We administrate the BENCI to 198 school-age children (98 boys and 100 girls) from Morocco. To examine the test retest reliability of the BENCI battery, we administered the battery 2 times to 43 children (23 boys and 20 girls) with 15 days in between the pre- and posttest. The results revealed good validity and reliability of the battery in Arabic children. Also, the BENCI battery has demonstrated the capacity to differentiate between children by their age group. This battery can be of great use to both the research and clinical areas of Arabic countries and/or in assistance to Arabic immigrants that live outside of their native country.