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.

Spiritual and Emotional Experience With a Diagnosis of Breast Cancer: A Scoping Review.

BACKGROUND: The breast cancer diagnosis causes a high level of suffering and distress in patients who experience difficulties in coping. There is a need to improve knowledge of emotional and spiritual coping in response to the stressful situation of women who must face this diagnosis. OBJECTIVES: The aims of this study were to map women's spiritual and emotional coping experiences reported after a breast cancer diagnosis and examine the proposed interventions and suggestions for clinical practice. METHODS: A scoping review was performed by searching the Scientific Electronic Library Online, Scopus, Cumulative Index to Nursing and Allied Health Literature, Latin American & Caribbean Health Sciences Literature, Medical Literature Analyses and Retrieval System Online, Spanish Bibliographic Index of Health Sciences, PSYCINFO, and Google Scholar databases using Medical Subject Headings terms. Additional pertinent studies were identified by reviewing the bibliographies of the included studies. Twenty articles were included according to the recommendations for scoping reviews. RESULTS: Study findings regarding emotional and spiritual coping with the diagnosis and proposed interventions were synthesized. A thematic list of interventions and recommendations for clinical practice is also provided. CONCLUSIONS: The studies demonstrated that women with breast cancer are challenged by their emotions and experiences. The review highlights the importance of spiritual coping for redefining women's meaning in life. In clinical practice, caring for women's inherent needs when they are coping with a diagnosis is important to establish integral care. IMPLICATIONS FOR PRACTICE: Nurses can evaluate coping strategies, offer support for adaptation to the disease, provide qualified listening, help women in their search for significance while coping with cancer, and help them identify ways to overcome this stressful situation. Similarly, they can encourage patients to find spiritual comfort and emotional support.

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.

Maternal and Neonatal Hair Cortisol Levels Are Associated with Infant Neurodevelopment at Six Months of Age.

BACKGROUND: Maternal stress during pregnancy can affect fetal development during certain sensitive periods. OBJECTIVE: To longitudinally assess maternal hair cortisol levels during pregnancy, and the postpartum along with neonatal hair cortisol levels that could be associated with infant neurodevelopment at six months of age. METHODS: A sample of 41 pregnant women longitudinally assessed during the first, second, and third trimester and the postpartum, along with their 41 full-term neonates participated in this study. Hair cortisol levels were assessed from participants. Infant neurodevelopment was assessed by means of the Bayley Scale of Infants Development, Third Edition at age six months. RESULTS: Maternal hair cortisol levels in the first and second trimester accounted for 24% and 23%, respectively, of variance of infant gross motor development (p < 0.05). Maternal hair cortisol levels during the postpartum accounted for 31% of variance of infant cognitive development (p < 0.05), and 25% of variance of infant gross motor development (p < 0.05). Neonatal hair cortisol levels accounted for 28% of variance of infant gross motor development (p < 0.05). CONCLUSIONS: The preconception and prenatal time are sensitive periods related to infant neurodevelopment along with the cortisol levels surrounding the fetus while in the womb. Pregnant women could be assessed for hair cortisol levels while attending a prenatal appointment.

Interaction between Socioeconomic Status and Cognitive Development in Children Aged 7, 9, and 11 Years: A Cross-Sectional Study.

The socioeconomic status (SES) of parents has a crucial influence on the cognitive development of children, but it is not clear whether this effect varies as a function of the children's age. The objective of this study was to investigate the development of children aged 7, 9, and 11 years of parents with extremely low SES in a developing country (Ecuador). Participating children were divided between a medium-SES group and a low-SES group. Statistically significant differences were observed as a function of SES group and age in verbal memory, language, and executive function, observing wider between-group differences among the 11-year-olds.

Application of Merleau-Pontyan perspective on the physical and psychological implications of venous ulcers.

OBJECTIVE: to verify the application of the Merleau-Pontyan perspective on the physical and psychological implications of chronic venous ulcers in the existence of people who experience the disease. METHOD: a qualitative study, of the descriptive phenomenological type, developed with 36 patients. The field of investigation was the Outpatient Clinic of Wound Repair of the Hospital Universitário Antônio Pedro. The collection occurred from June to December 2016, through a phenomenological interview. RESULTS: the experiences inherent in people who have venous ulcers pass through the world and "return" to the body itself, reflecting on the biopsychosocial aspects and the sensitivity left on the being. CONCLUSION: the biological characteristics of the subject affected by the venous ulcer have repercussions on their physical aspect, promoting influences along with the emotional and social changes originating from the clinical picture on the social aspects and consequently reverberating on the quality of life of this individual.

Application of Merleau-Pontyan perspective on the physical and psychological implications of venous ulcers / Aplicación de la perspectiva Merleau-Pontiana sobre las implicaciones físicas y psicológicas de las úlceras venosas / Aplicação da perspectiva Merleau-Pontiana sobre implicações físicas e psicológicas das úlceras venosas

ABSTRACT Objective: to verify the application of the Merleau-Pontyan perspective on the physical and psychological implications of chronic venous ulcers in the existence of people who experience the disease. Method: a qualitative study, of the descriptive phenomenological type, developed with 36 patients. The field of investigation was the Outpatient Clinic of Wound Repair of the Hospital Universitário Antônio Pedro. The collection occurred from June to December 2016, through a phenomenological interview. Results: the experiences inherent in people who have venous ulcers pass through the world and "return" to the body itself, reflecting on the biopsychosocial aspects and the sensitivity left on the being. Conclusion: the biological characteristics of the subject affected by the venous ulcer have repercussions on their physical aspect, promoting influences along with the emotional and social changes originating from the clinical picture on the social aspects and consequently reverberating on the quality of life of this individual.

RESUMEN Objetivo: verificar la aplicación de la perspectiva Merleau-Pontiana sobre las implicaciones físicas y psicológicas de las úlceras venosas crónicas en la existencia de las personas que experimentan la enfermedad. Método: estudio de abordaje cualitativo, del tipo fenomenológico descriptivo, desarrollado con 36 pacientes. El campo de investigación fue el Ambulatorio de Reparación de Heridas del Hospital Universitario Antônio Pedro. La recolección ocurrió de junio a diciembre de 2016, por medio de una entrevista fenomenológica. Resultados: las experiencias vivenciales inherentes a las personas que poseen las úlceras venosas atravesan por el mundo y "retornan" al cuerpo propio, reflexionando sobre los aspectos biopsicosociales y sobre la sensibilidad que reposa sobre el ser. Conclusión: la característica biológica del sujeto acometido por la úlcera venosa repercutirá sobre su aspecto físico, promoviendo influencias junto a las alteraciones emocionales y sociales oriundas del cuadro clínico sobre los aspectos sociales y consecuentemente reverberando sobre la calidad de vida de este individuo.

RESUMO Objetivo: verificar a aplicação da perspectiva Merleau-Pontiana sobre as implicações físicas e psicológicas das úlceras venosas crônicas na existência das pessoas que vivenciam a doença. Método: estudo de abordagem qualitativa, do tipo fenomenológico descritivo, desenvolvido com 36 pacientes. O campo de investigação foi o Ambulatório de Reparo de Feridas do Hospital Universitário Antônio Pedro. A coleta ocorreu de junho a dezembro de 2016, por meio de uma entrevista fenomenológica. Resultados: as experiências vivenciais inerentes às pessoas que possuem as úlceras venosas perpassam pelo mundo e "retornam" ao corpo próprio, refletindo sobre os aspectos biopsicossociais e sobre a sensibilidade que repousa sobre o ser. Conclusão: a característica biológica do sujeito acometido pela úlcera venosa repercutirá sobre seu aspecto físico, promovendo influências juntamente às alterações emocionais e sociais oriundas do quadro clínico sobre os aspectos sociais e consequentemente reverberando sobre a qualidade de vida deste indivíduo.