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.

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.

Coexisting with dependence and well-being: the results of a pilot study intervention on 75-99-year-old individuals.

BACKGROUND: The objective of this study is to design and implement an intervention program centered on preventing functional dependence. METHODS: A pre/post quasi-experimental (typical case) design study with a control group was conducted on a group of 75-90-year-old individuals with functional dependence (n = 59) at three nursing homes in Madrid (Spain). The intervention program consists of two types of activities developed simultaneously. Some focused on emotional well-being (nine 90-minute sessions, once per week), whereas others focused on improving participants' physical condition (two 30-minute sessions, twice per week). The simple randomized participants included 59 elderly individuals (Intervention Group = 30, Control Group = 29) (mean age 86.80) [SD, 5. 19]. RESULTS: Fifty-nine participants were analyzed. The results indicate that the program is effective in improving mood, lowering anxiety levels (d = 0.81), and increasing both self-esteem (d = 0.65) and the perception of self-efficacy (d = 1.04). There are improvements in systolic pressure and functional dependence levels are maintained. Linear simple regression (independent variable pre-Barthel) shows that the pre-intervention dependence level can predict self-esteem after the intervention. CONCLUSION: We have demonstrated that the program is innovative with regard to bio-psychosocial care in elderly individuals, is based on actual practice, and is effective in increasing both self-esteem and self-efficacy. These variables positively affect functional capabilities and delay functional dependence.

Needs Perceived by Parents of Preterm Infants: Integrating Care Into the Early Discharge Process.

UNLABELLED: The birth of a preterm infant can have a great emotional impact on the parents when the length of stay is long. Early discharge programs facilitate the transition to the home and have beneficial effects on both the parents and children. However, only a few studies have been conducted to identify the real needs of parents of preterm infants and to determine whether early discharge programs meet such needs. The main objective of this study was to identify the experiences and obstacles, during hospitalization and after discharge, of fathers and mothers of preterm infants who did or did not participate in an early discharge program. METHOD: A qualitative study using semi-structured interviews was performed and included 23 parents of preterm infants. Thematic analysis was performed with the assistance of Atlas.ti 6.2 software. RESULTS: Two main themes were identified: the emotional experience and obstacles to care during hospitalization and the emotional experiences and obstacles at home related to the early discharge program. The results indicated that preterm birth initially has a deep emotional impact on parents. DISCUSSION: There is a remarkable lack of coordination regarding the information provided to parents on their infant's health status. Being first-time parents seems to be an important factor, although further evidence supporting this notion should be provided. CONCLUSION: Parents considered early discharge programs to be very useful in addressing the emotional aspects of hospitalization and the acquisition of neonatal care skills. Parents claim that the coordination and the information provided should be improved.

[Wellbeing of Chilean older adults is associated with group participation]. / Factores sociodemográficos y de participación social relacionados con el bienestar psicológico en adultos mayores en la región de Magallanes, Chile.

BACKGROUND: Subjective aspects such as personal growth and the development of their potential are relevant for the perception of wellbeing of older adults. These dimensions appear to be connected with meaningful group participation. AIM: To assess the perception of psychological wellbeing of older adults in a Chilean region and determine its association with socio-demographic variables and participation in organizations. MATERIAL AND METHODS: Ryff's scale of psychological wellbeing perception was applied to 101 adults (43 men) from Magallanes, aged 60 and 88 years. Sociodemographic data was also collected. RESULTS: Mean wellbeing scores reported were 193.7 ± 20 (maximum score: 234). Those older adults who participated in organizations had higher scores than those who did not take part in them. Participation in organizations appeared to be specifically associated to positive relationships (p = 0.03) and personal growth (p < 0.01). The number of organizations in which older adults participated was positively correlated with the perception of wellbeing (p < 0.01). Greater personal wellbeing was associated with leadership roles in organizations (p = 0.01). Significant differences between level of schooling and personal growth (p = 0.01) were also observed found. There were no differences associated with sex, age and marital status. CONCLUSIONS: The perception of wellbeing of older adults is influenced by their participation in organizations. Leadership is associated with the highest levels of wellbeing.

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.

Neuropsychological evaluation of high-risk children from birth to seven years of age.

UNLABELLED: High Risk Children (HRC) are those with an increased risk of abnormal development due to any factor affecting neurological growth. Those factors have been the focus of most studies in this area. However, little is known about their long-term consequences over the course of child development. OBJECTIVES: The goal was to study the cognitive, emotional and academic outcomes of 7-year-old children diagnosed as HRC at birth. METHOD: We compared 14 HRC and 20 healthy children using the WISC-IV, BASC and Brunet-Lezine tests. RESULTS: HRC showed cognitive, emotional and academic deficits compared with healthy children. However, Brunet-Lezine scores obtained over the course of development (6, 12, 18 and 24 months) were not predictive of the children's' current psychological status. CONCLUSIONS: Long-term follow-up with HRC should be maintained until 7 years of age, at which point an appropriate treatment should be implemented.

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.

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.

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.

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.

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.

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.

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.

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.

Bad news for the patient and the family? The worst part of being a health care professional.

In Spain, there is a general tendency to conceal the prognosis from a terminally ill patient. We conducted grounded-theory-based, phenomenological, qualitative research on this using a final sample of 42 in-depth interviews with doctors and nurses from different fields. We found that most health professionals believe that although patients don't ask questions, they know what is happening to them. Many professionals feel bad when communicating bad news. In hospitals, doctors take responsibility for doing so. The attitudes of professionals are influenced by their sense of responsibility and commitment to the principle of patient autonomy, as well as to the level of their agreement with the cultural context. The tacit agreement of silence makes communication impossible: the patient does not ask questions, the health professional does not want to be interrogated, and family members don't talk about the disease and want health professionals to follow their example. This situation is detrimental to patients and their families and leads to suffering, low levels of satisfaction, and feelings of guilt and helplessness. Health care professionals must acquire the means and the skills for communicating bad news.

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.

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.