Pragmatic skills in people with Williams syndrome: the perception of families.

BACKGROUND: One of the most challenging linguistic areas in people with Williams Syndrome throughout their evolutionary stage is the development of pragmatic skills. The research conducted so far highlights specific problems concerning adaptation to the linguistic context and interlocutors, language comprehension, as well as other aspects interfering with verbal communication. However, until now, most scientific evidence has been based on personal assessments of this group. In a complementary manner, the goal of this study was to discover the level of pragmatic skills of people with Williams Syndrome from the point of view of the families. The sample consisted of 34 families belonging to the Williams Syndrome Association of Spain. The assessment instrument was the pragmatic awareness questionnaire, which includes 26 items related to different aspects that are part of the pragmatic area on a Likert-type scale. RESULTS: The results indicate that, families consider there to be a regular to low level in all the areas assessed. The strong points seem to lie in the paralinguistic aspects, while the weakest factors are those related to the understanding of figurative language. CONCLUSIONS: Therefore, it is necessary to continue insisting on the importance of language intervention in this group throughout its development to improve its level of linguistic competence.

Families' perception of terminal patients' prognosis awareness is associated with families' own grief: Evidence from a hospital in China.

AIM: The aim of the study was to explore how families' perceptions of dying patients' prognosis awareness influence families' grief. DESIGN: A cross-sectional design was adopted. METHOD: Data were collected from a survey of family caregivers of deceased patients through a tertiary hospital in Mainland China between October 2018 and April 2021. One question asked about families' perceptions of patients' awareness of their prognosis, and the Chinese Grief Reaction Assessment Form was used to measure grief. A multiple linear regression with control variables was run to test the link. Missing data were handled with multiple imputation. RESULTS: A total of 181 participants were involved in the analyses. After whether the patient received professional end-of-life care in the last days, the place of death and several basic information variables were controlled, families' grief was more intense when they were sure that patients were unaware of the terminal prognosis compared to when they believed that patients were aware or not sure about the patient's awareness. The latter two groups did not differ significantly in grief intensity. CONCLUSION: For Chinese family caregivers in the present study, terminal patients' awareness of their prognosis is more beneficial than harmful to their bereavement adaptation. This raises empirical concerns over the assumption that truth is harmful and the nondisclosure pattern on such a basis. IMPACT: The findings extend knowledge on the outcomes of information disclosure from the perspective of bereaved family caregivers. Meanwhile, it informs services for the dying and the bereaved: When making decisions about prognosis disclosure to terminally ill patients, potential impacts on not only patients but also families need to be fully considered. For families who are sure that the patient was never aware of the prognosis, additional support ought to be provided to address their intense grief reactions. PATIENT OR PUBLIC CONTRIBUTION: Several professional caregivers helped revise the questionnaire.

Family perceptions and experiences of living with patients with fibromyalgia syndrome.

PURPOSE: To explore the perception of the illness and the experience of the illness for relatives of fibromyalgia syndrome (FMS) patients. MATERIALS AND METHODS: This qualitative interpretative study adopted a grounded theory research methodology with a purposive sample. We conducted a focus group with 11 family members of FMS patients. There were six men and five women, five were spouses and six were children (four husbands and one wife, and five daughters and one son). RESULTS: Three categories of family perceptions of FMS emerged: (1) manifestations of FMS; (2) FMS is regarded as a psychological problem; (3) FMS interferes with traditional gender roles. Three categories of family members' experience of living with FMS patients were identified: (1) emotional concerns and exhaustion; (2) overprotective family members; and (3) escape coping. CONCLUSIONS: Family members feel emotionally burdened, can be overprotective and over-involved and find it difficult to set limits ultimately succumbing to a vicious cycle of caregiving and emotional exhaustion from which they find it difficult to escape. As the perceptions and experiences of family members of FMS patients are not commonly studied, the present findings offer new insights for families and elucidate important points of intervention.Implications for rehabilitationBecause family members tend to dismiss fibromyalgia as a psychological problem for which ignoring or distracting the patient is the best approach to coping, rehabilitation programs should give family members education and training to develop the ability to better understand fibromyalgia and reduce stereotypes about the condition.Rehabilitation programs should work to identify and manage marital and family systems dysfunction that may be interfering with fibromyalgia patients' adjustment and quality of life.Family members often engage in maladaptive escape coping to manage the demands of living with patients with fibromyalgia, and rehabilitation professionals should be ready to engage and refer to allied specialists to assist family members in finding alternatives for more effective coping approaches that improve patient and family mental health and social relations.Rehabilitation programs for fibromyalgia patients should use a gender perspective and emphasize patient and spouse equality in activities of daily living as many patients and family members feel uncomfortable about not fulfilling traditional gender roles.

Percepción familiar sobre la ortotanasia y distanasia en cuidadores de pacientes oncológicos

En la atención al paciente en estadío terminal de causa oncológica, un tema que cobra importancia es la percepción sobre la distanasia y ortotanasia en los cuidadores como alternativa sentida al final de la vida. El objetivo de la investigación fue caracterizar la percepción familiar de los cuidadores de los enfermos terminales sobre la distanasia y la ortotanasia como alternativa sentida al final de la vida en la Policlínica Universitaria ¨Ángel Ortiz Vázquez¨. Se realizó un estudio cuantitativo-cualitativo. La muestra quedó conformada por 6 cuidadores. Se estudiaron las variables conocimiento real y referido en relación con enfermo terminal y enfermedad terminal, así como la ortotanasia y distanasia, la percepción familiar sobre la ortotanasia y distanasia y la elección de alternativa sentida al final de la vida. En el proceso investigativo se emplearon una encuesta, la entrevista, la entrevista en profundidad y la composición. El análisis de los datos se articula a través de la asunción de la triangulación como estrategia metodológica. Emergió que en el 83,3 % de los cuidadores refirieron como alternativa sentida de elección al final de vida la ortotanasia. Mostraron insuficientes conocimientos en relación con los conceptos enfermo terminal-enfermedad terminal y ortotanasia-distanasia en ambas técnicas. La percepción familiar es de aceptación. La percepción familiar de los cuidadores sobre la distanasia-ortotanasia es de aceptación, con actitudes positivas y la elección de la ortotanasia como alternativa sentida al final de la vida para el sujeto, pues consideran que la misma es la mejor opción para disminuir el sufrimiento.

In the care of patients in the terminal stage of oncological causes, an issue that gains importance is the perception of distanasia and orthothanasia in caregivers as an alternative felt at the end of life. The objective of the research was to characterize the family perception of the caregivers of the terminally ill about distanasia and orthothanasia as an alternative felt at the end of life at the ¨Ángel Ortiz Vázquez¨ University Polyclinic. A quantitative-qualitative study was carried out. The sample was made up of 6 caregivers. The variables real and referred knowledge in relation to terminally ill and terminally ill were studied, as well as orthothanasia and distanasia, family perception of orthothanasia and distanasia and the choice of alternative felt at the end of life. In the investigative process, a survey, the interview, the in-depth interview and the composition were used. The data analysis is articulated through the assumption of triangulation as a methodological strategy. It emerged that 83.3% of the caregivers referred to orthothanasia as a felt alternative of choice at the end of life. They showed insufficient knowledge in relation to the terminally ill-terminally ill and orthothanasia-distanasia concepts in both techniques. The familiar perception is one of acceptance. The family perception of caregivers about distanasia-orthothanasia is one of acceptance, with positive attitudes and the choice of orthothanasia as an alternative felt at the end of life for the subject, since they consider that it is the best option to reduce suffering.

No cuidado aos pacientes em fase terminal de causas oncológicas, uma questão que ganha importância é a percepção da distanásia e da ortotanásia nos cuidadores como alternativa sentida no final da vida. O objetivo da pesquisa foi caracterizar a percepção de familiares de cuidadores de pacientes em fase terminal sobre distanásia e ortotanásia como uma alternativa sentida no final da vida na Policlínica Universitária ¨Ángel Ortiz Vázquez¨. Foi realizado um estudo quantitativo-qualitativo. A amostra foi composta por 6 cuidadores. Foram estudadas as variáveis ​​conhecimento real e referido em relação ao doente terminal e doente terminal, bem como a ortotanásia e distanásia, a percepção familiar da ortotanásia e distanásia e a escolha da alternativa sentida no final da vida. No processo investigativo utilizou-se o survey, a entrevista, a entrevista em profundidade e a redação. A análise dos dados articula-se no pressuposto da triangulação como estratégia metodológica. Verificou-se que 83,3% dos cuidadores referiram a ortotanásia como uma alternativa sentida de escolha no final da vida. Apresentaram conhecimento insuficiente em relação aos conceitos de doente terminal-terminal e ortotanásia-distanásia em ambas as técnicas. A percepção familiar é de aceitação. A percepção dos familiares dos cuidadores sobre a distanásia-ortotanásia é de aceitação, com atitudes positivas e a escolha da ortotanásia como alternativa sentida no final da vida para o sujeito, por considerarem que é a melhor opção para diminuir o sofrimento.

Inter-ICU transfer of patients with ventilator dependent respiratory failure: Qualitative analysis of family and physician perspectives.

OBJECTIVES: Ventilator dependent respiratory failure (VDRF) patients are seriously ill and often transferred between ICUs. Our objective was to obtain multi-stakeholder insights into the experiences of families during inter-ICU transfer. METHODS: We conducted a qualitative study using semi-structured interviews with family members of VDRF patients as well as clinicians that have received or transferred VDRF patients to our hospital. Interviews were transcribed and template analysis was used to identify themes within/across stakeholder groups. RESULTS: Patient, family, clinician and systems-level factors were identified as key themes during inter-ICU transfer. The main findings highlight that family members were rarely engaged in the decision to transfer as well as a lack of standardized communication between clinicians during care transitions. Family members were reassured with the care after transfer in spite of practical and financial challenges. Clinicians acknowledged the lack of a systematic approach for meeting the needs of families and suggested various resources. CONCLUSIONS: This is one of the first qualitative studies to gather a multi-stakeholder perspective and identify problems faced by families during inter-ICU transfer of VDRF patients. PRACTICE IMPLICATIONS: Our results provide a starting point for the development of family-centered support interventions which will need to be tested in future studies.

Outcome parameters associated with perceived helpfulness of family-based treatment for adolescent eating disorders.

OBJECTIVE: Family-based treatment (FBT) is an efficacious treatment for adolescent eating disorders, yet it is not routinely implemented in clinical practice. Given that consumers play a role in treatment selection, this study sought to examine families' perspectives on FBT and remission markers associated with increased treatment satisfaction across families. METHOD: Participants were 40 adolescents and 43 caregivers who received outpatient FBT. FBT helpfulness was assessed using a treatment follow-up questionnaire, and eating disorder symptomatology was assessed using percent expected body weight (%EBW) and the eating disorder examination (EDE). Regression analyses were used to assess whether changes in symptoms from baseline to end-of-treatment (EOT) were significantly associated with helpfulness reports. RESULTS: On average, patients and their parents perceived FBT as "quite helpful" and "extremely helpful," respectively. Improvements in all EDE subscales, with the exception of restraint, were significantly associated with adolescent report of helpfulness (all p < .05); increase in %EBW was significantly associated with maternal report of helpfulness (p = .03). There were no significant findings for paternal report. DISCUSSION: Both patients and their parents perceived FBT as helpful, but patients seemed to prioritize cognitive improvements while mothers prioritized physical improvements in rating their satisfaction with FBT.

School going adolescents' perception of family climate and mental problems: Results from Kocaeli, Turkey.

OBJECTIVE: To investigate the association between the perception of expressed emotion and psychopathology of school-going adolescents in a non-clinical sample. METHODS: The cross-sectional field study was conducted in Kocaeli, Turkey, and comprised high-school students during the 2014-15 school years. Data was collected using the Information Collection Form, Strengths and Difficulties Questionnaire and Shortened Level of Expressed Emotion Scale. SPSS 21 was used for data analysis. RESULTS: Of the 487 subjects, 295(60.57%) were girls and 192(39.43%) were boys. The overall median age was 16 (inter-quartile range: 15-17 years). There were significant positive relationships between the scales in terms of emotional problems (p<0.001), behavioural problems (p<0.001), Attention-deficit/hyperactivity disorder (p<0.001), and peer relationship problems (p<0.001). There was also a negative significant relationship between pro-social behaviours and expressed emotion (p<0.001). CONCLUSIONS: The concept of perceived expressed emotion in non-clinical adolescents is useful in alarming clinicians and preventing mental disorders.

Implicações da pouca preocupação e percepção familiar no sobrepeso infantil no município de Curitiba, PR, Brasil / The implications of family lack of concern and perception of obesity in childhood in the city of Curitiba, State of Paraná, Brazil

Resumo O presente trabalho propôs relacionar o sobrepeso infantil com a percepção familiar da silhueta da criança e a preocupação com o excesso de peso na infância. Foi realizado um estudo transversal com crianças de 20 a 48 meses de idade usuárias de Unidades de Saúde ou centros de ensino infantil de Curitiba, no período de junho a dezembro de 2014. Fez-se uso de questionário para coletar dados referentes a renda familiar, peso, altura, percepção da silhueta da criança e verificar a preocupação com o excesso de peso. O sobrepeso e a obesidade não foram percebidos corretamente pelos responsáveis (kappa =0,11) e grande parte destes não sabiam o peso e altura da crianças e nem estavam preocupados com excesso de peso. Na população estudada, as crianças de famílias de menor renda apresentaram mais chance de desenvolver sobrepeso na infância (p = 0,02). Se faz necessário investir na sensibilização das famílias, pois é de extrema importância a atenção à obesidade desde a infância prevenindo assim novos casos e evitando agravos na vida adulta.

Abstract The scope of this study was to relate child obesity with the family’s perception of the child’s silhouette’s and concern with excess weight in childhood A cross-sectional study was conducted among children aged between 20 and 48 months who frequent Health Units or are preschoolers in the city of Curitiba from June to December 2014. A questionnaire was used to collect data relating to family income, weight, height, perception of child silhouette’s and assess concern about obesity by parents. Overweight and obesity was not correctly perceived by relations (kappa = 0,11) and the vast majority of parents did not know the child’s height and weight and were not even concerned with childhood obesity. In the population studied, children from lower income family were more likely to suffer from overweight in childhood (p = 0,02). It is necessary to invest in the sensitization of families, since it is extremely important to pay attention to obesity from childhood onwards, thus preventing new cases and avoiding problems in adult life.

How Do Male and Female Medical Students Perceive Their Own Career? Implications from a Student Viewpoint / 日本プライマリ・ケア連合学会誌

<b>Introduction</b>: The aim of this study is to explore career perceptions of male and female medical students.<br><b>Methods</b>: Semi-structured interviews to 16 medical students (9males, 7 females) were undertaken.<br><b>Results</b>: Qualitative data analysis showed that development of their career perceptions were affected by “gender view”, “interests in medicine” as well as their “perceptions of family”. Specifically, female students in the lower grades felt difficulty in making decisions on career choices due to the conflict between carrying out family responsibilities (e.g., housework and childcare) and interests in medicine. After clinical clerkships, their perceptions of a career were formed in one of two ways: giving priority to family responsibilities or interest in medicine. On the other hand, male students in lower and higher grades consistently gave priority to their interests in medicine for their career choices.<br><b>Conclusion</b>: Differing career perceptions between male and female medical students emerged from this study, and supports the need for undergraduate education on gender-equality in society.

Family perceptions of quality of hospice care in the nursing home.

CONTEXT: Nursing homes (NHs) are increasingly the site of hospice care. High quality of care is dependent on successful NH-hospice collaboration. OBJECTIVES: To examine bereaved family members' perceptions of NH-hospice collaborations in terms of what they believe went well or could have been improved. METHODS: Focus groups were conducted with bereaved family members from five diverse geographic regions, and included participants from inner city and rural settings, with oversampling of African Americans. RESULTS: A total of 28 participants (14.8% African American, mean age 61.4 years) identified three major aspects of collaboration as important to care delivery. First, most (67.9%) voiced concerns with knowing who (NH or hospice) is responsible for which aspects of patient care. Second, nearly half (42.9%) stated concern about information coordination between the NH and hospice. Finally, 67.9% of the participants mentioned the need for hospice to advocate for high-quality care rather than their having to directly do so on behalf of their family members. CONCLUSION: The important concerns raised by bereaved family members about NH-hospice collaboration have been incorporated into the revised Family Evaluation of Hospice Care, a post-death survey used to evaluate quality of hospice care.

A Comparative Study on Family Perception between Abused Children and Normal Children by Kinetic Family Drawing / 간호학회지

PURPOSE: The study attempted to find family perception differences between abused children and normal children by Kinetic Family Drawing. METHOD: The subjects of the study consisted of two groups, 143 abused who were in the upper 25th percentile, and 150 normal who were in the lower 25th percentile. Collected Kinetic Family Drawings were divided into five dimensions such as actions, human figure characteristics, dynamics, styles and symbols, and they was analyzed with SPSS/WIN 10.0. RESULTS: In the perception about their family in action dimension, their family in figure characteristics dimension, their family in dynamics dimensions, and their family in symbols dimension, there is a sharp contrast between the two groups. CONCLUSION: Putting these results together, abused children feel lower self-esteem and feel more sense of alienation in their family than normal children do. In addition, abused children perceive their parents as negative and aggressive people.