The Best and the Worst Things About the Hospital for Children with Cancer: A Qualitative, Interview-Based Study in a Spanish Hospital.

The comprehensive psychosocial assessment of children with cancer requires listening to them and understanding their point of view. The objective of this work was to know what the participating children with cancer thought about the hospital, which they considered to be the best and worst aspects of their experience. We conducted a qualitative study using semi-structured interviews with 27 children with cancer. The interviewer asked the participating children what they considered to be the best thing about the hospital and what they considered to be the worst. These conversations with them were recorded and transcribed, and a thematic analysis of these transcripts was conducted. Among the aspects of the hospital that the children rated most highly was the treatment they received from the health care staff. Among what the children considered the worst aspect of their experience was pain, particularly pain caused by medical procedures such as injections. The obtained results lead us to conclude that children have a complex view of the hospital and are capable of a detailed analysis that must be taken into account.

Religious-spiritual experiences of family members and caregivers of children and adolescents with cancer.

This integrative literature review aimed to identify the religious and spiritual experiences of family members and caregivers of children and adolescents with cancer. Through systematized searches in the databases/libraries CINAHL, PsycINFO, Pubmed, SciELO, and Lilacs, 69 articles produced between 2010 and 2020 were retrieved. There was a predominance of studies with parents developed in hospital facilities. The caregivers' religious and spiritual experiences helped them to cope with childhood cancer, especially in maintaining hope, reducing stress and anxiety symptoms, as well as in providing psychological and social support. Negative outcomes such as questioning faith, the feeling of punishment, and disruption with the religious and spiritual group were also perceived. It is recommended to include religiosity and spirituality for the provision of more humanized and comprehensive care, as well as further investigation of the negative experiences regarding religiosity and spirituality in this public.

Religious and Spiritual Practices Used by Children and Adolescents to Cope with Cancer.

This study consists of an integrative review of the scientific literature that aimed to know the religious and spiritual practices used by children and adolescents to cope with cancer. From searches in the databases/libraries CINAHL, PsycINFO, PubMed, SciELO and Lilacs (2009-2019), the final sample consisted of 20 articles. Prayers were the most widely used practices, followed by sacred books and objects, going to sacred places and the use of music. Improvements in well-being, physical and emotional health have been reported. It is concluded that such practices should be recognized as important resources in coping with cancer illness in this population.

Visual Arts in Children's Hospitals: Scoping Review.

PURPOSE: The purpose of this work was to review scientific publications related to the use of visual arts in pediatric hospitals. BACKGROUND: Visual arts, particularly painting, have historically played an important role in the design and atmosphere of healthcare spaces, especially hospitals. METHODS: From 2000 to 2019, 79 publications located in relevant databases and manual searches were identified and analyzed. RESULTS: Sixty of these publications include empirical studies and 19 theoretical models, comments, or reflections on the use of art in children's hospitals. Their analysis allows us to differentiate four groups of works: (a) "environmental" includes works whose purpose is to know how visual artistic interventions in the hospital can affect the people who see them, mainly pediatric patients, families, and health workers; (b) "participatory" includes studies aimed at knowing the effect of developing visual arts activities in the hospital; (c) "exploratory" includes works whose purpose was to know more about the children's perspective using their artistic expressions; and (d) "diagnostic" includes those that use children's drawings as a tool to diagnose diverse processes related to the pediatric patients' experience. CONCLUSIONS: Taken together, the works we analyzed in our study support the use of visual arts in hospitals as a resource to enhance the well-being of children and families and their experience in the hospital. We indicate two particularly relevant aspects in this sense: the importance of the visual arts in improving the symbolic quality of hospitalization settings and the communication processes that occur in these environments.

The Adaptation and Psychometric Properties of the Kid-KINDLR for Hospitalized Children in Chile.

PURPOSE: The impact of hospitalization on a child's well-being leads one to consider the health-related quality of life (HRQoL) measure as a fundamental aspect of pediatric care. The aims of the study were to adapt the Spanish version of the Kid-KINDL® to hospitalized children in Chile, to obtain a reduced version of the instrument and to analyze the psychometric properties of the reduced version. DESIGN AND METHODS: An expert committee and interviews were carried out for the cross-cultural adaptation process. An exploratory factor analysis was conducted to examine the validity of the construct and to select the items for the reduced version. Cronbach's alpha was used to estimate the internal consistency of the adapted version of the Kid-KINDL® and the reliability of each component. Convergent validity was based on correlations with a pain scale. RESULTS: This adapted and shorter instrument, similar to the original version, comprises five components that include the principal dimensions of HRQoL. Evaluating the School dimension in hospitalized children was considered inappropriate in Chilean public hospitals. The study replicates the relationship found between a child with high pain and low reported HRQoL. CONCLUSIONS: The hospitalization process impacted the children's perceptions of their HRQoL. The reduced version of the Kid-KINDL® was found to be a valid instrument for assessing children's HRQoL in hospital units. PRACTICE IMPLICATIONS: Finding effective ways to measure HRQoL and ultimately mitigate barriers and foster resilience are important clinical and research priorities in the pursuit of HRQoL for hospitalized children and their families.

Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy?

Physical, social, and attitudinal environment may affect the quality of life (QoL) of children and adolescents with cerebral palsy (CP). Participants in this study included parents of 206 children and adolescents with CP (55.8% males) aged 8-18 years (M=11.96, SD=3). Distribution according to the Gross Motor Function Classification System (GMFCS) was 24.3% level I, 18% level II, 18% level III, 12.6% level IV, and 27.2 level V. Environmental barriers were assessed with the Spanish version of the European Child Environment Questionnaire (ECEQ), and QoL was assessed with the KIDSCREEN parents' version. The results of the correlation analysis revealed that GMFCS level, IQ, and type of schooling are significantly correlated with QoL. Barriers were also associated with QoL. A series of hierarchical regression analyses indicated that, after controlling for the effect of child and parent's variables, barriers at home and at school significantly contribute to QoL. These findings underscore the importance of providing interventions to produce environmental changes that contribute to the improvement of QoL.

The effect of a program to promote play to reduce children's post-surgical pain: with plush toys, it hurts less.

Various nonpharmacological strategies to relieve hospitalized children's pain propose play as a central element. Play is considered an essential resource to improve the negative psychosocial effects of the disease and the hospitalization itself. However, the empirical research of play in health settings has not received much attention. The goal of this study was to determine the effect of a program to promote play in the hospital on postsurgical pain in pediatric patients. The research hypothesis was that children will manifest less pain if they are distracted through play during the postsurgical period. We carried out a randomized parallel trial with two groups, an experimental group and a control group. The control group did not receive any specific treatment, only the standard attention contemplated in the hospital. The parents of the children from the experimental group received instructions to play with their children in the postsurgical period and specific play material with which to play. The results obtained support the research hypothesis. On average, the children from the experimental group scored lower on a pain scale than the children from the control group. This occurred in the three postsurgical measurements of pain. It is concluded that the program to promote play can decrease children's perception of pain.

Contributions of an artistic educational program for older people with early dementia: an exploratory qualitative study.

OBJECTIVE: To describe a contemporary artistic educational program based on photographic cyanotype techniques and to present the results of the program carried out with older people with early dementia. We determined whether these people could participate in the program, their viewpoint about it, and what this program could contribute to their experience. METHOD: Twenty-one people diagnosed with mild or moderate dementia participated in a series of artistic education workshops. While conducting the workshops, participant observation was carried out, and the participants' engagement was assessed. Upon completing the series, five focus groups were held with the participants with dementia, and another focus group with their professional caretakers. RESULTS: We observed the participants' high level of commitment to the activity and their interest in learning new things. We also observed the participants' satisfaction during the creative process and with their results. The artistic activities not only reinforced the feelings of capacity of the participants with early dementia but also transmitted a positive image of them. CONCLUSIONS: Dementia was not an obstacle to participation in the program, which was an opportunity for creativity, learning, enjoyment, and communication for people with dementia. In the authors' opinion, facilitating access to art and artistic education to people with early dementia can contribute to enforcing their rights and to improving the care system.

Relationships between leisure participation and quality of life of people with developmental disabilities.

BACKGROUND: Studies of people with developmental disabilities suggest that participation in leisure activities might be a key factor for good quality of life. This study explores the relationships between objective and subjective quality of life and leisure participation of adults with developmental disabilities. MATERIALS AND METHODS: A cross-sectional design was used with a convenience sample of 125 people, aged 17-65, living in the community. Participants completed the subjective scale of Integral Quality Scale and the Leisure Assessment Inventory in the form of an individual interview. Staff completed the GENCAT Scale. RESULTS: No relationship was found between objective quality of life and leisure participation. However, correlations between some leisure participation dimensions and specific subjective quality of life domains were observed. The results establish a predictive relationship between leisure participation and material, emotional, and physical well-being. Personal and environmental variables analyzed were not found to have a moderating effect on the relationship between leisure participation and quality of life. CONCLUSIONS: These findings indicate that some aspects of leisure participation may significantly contribute to enhancing the quality of life of young people and adults with developmental disabilities living in the community.

Perspectives of youths and adults improve the care of hospitalized adolescents in Spain.

PURPOSE: The purpose of this study was to determine and compare the preferences and priorities of youths and adults about the best ways to improve hospitals to have an impact on the quality of life of hospitalized adolescents. METHOD: Participants in this study were 364 adolescents between 14 and 17 years of age (96 hospitalized) and 148 adults (96 parents of patients and 52 health professionals). All the participants completed a questionnaire about their preferences and priorities with regard to hospitalization. RESULTS: A high degree of agreement among the youths and the adults was observed, especially regarding the importance assigned to agreeableness of clinical staff to improveadolescents' experience of hospitalization. Some discrepancies also were observed. The youths granted more importance to issues related to filling in time, specifically to the leisure technology available for patients. The adults assigned more importance to the organization of the hospital stay, in particular, for adolescents to be admitted with patients of the same age and for them to receive academic support in the hospital. CONCLUSIONS: Adolescents express a coherent perspective about the aspects that may help them feel better in the hospital that in some ways is different from the perspective of the adults who care for them.

Personal factors and perceived barriers to participation in leisure activities for young and adults with developmental disabilities.

Participation in leisure activities has been identified as a factor that favors inclusion in the community and it also contributes to a better quality of life. This study analyzed the influence of certain personal characteristics and environmental factors in the participation in leisure activities of youngsters and adults with developmental disabilities. A cross-sectional design was used with a convenience sample of 237 people, aged 17-65, living in the community. The participants completed the Spanish version of the Leisure Assessment Inventory, and information about the personal and disability-related factors was obtained through a questionnaire. Multiple regression analyses were conducted to determine the personal factors, disability-related factors, and perceived barriers to leisure participation. The results show that participation in leisure activities is determined more by personal factors and perceived barriers than by disability-related factors.

[Humanization through the art of environment of children's emergency in a hospital]. / Mejorar los espacios de salud: humanización a través del arte.

This article aims to present and discuss a case-study of human betterment through the arts applied to a children's hospital. The experience related to the betterment of these environments took place in the Children's Emergency Service of the University Hospital in Salamanca. After describing the context of the case-study some attention will be devoted to the phases of the process, emphasizing those aspects linked to children's care culture and their families as well as the symbolic dimension of the space and the participation of different professionals in the experience. The case-study is assessed from different standpoints but special importance is given to parents' opinions. 51 parents of children in the emergency unit were interweaved during a month. Parents valued positively the service and stated that artists' intervention had been beneficial for the children's emotional state. The article concludes with a debate about the meaning of the hospital environment and the quality associated with its physical premises.

[Friendly hospitals for adolescents: patients' preferences]. / Hospitales amigables para adolescentes: preferencias de los pacientes.

OBJECTIVE: To determine the preferences and priorities of a sample of hospitalized adolescents on potential ways to improve their stay in the hospital. METHOD: We performed a prospective, cross-sectional, descriptive study. The participants completed a questionnaire on their preferences and priorities regarding hospitalization, which included data about age, sex, and hospitalization experience. There were 15 questions (Likert-type scale) to score from 1 to 5 the importance they gave to different aspects of the hospital stay, 6 questions with various response options on their preferences concerning roommates and accompanying person at night in the hospital, and 5 open questions to indicate positive and negative aspects on hospitalization and suggestions to improve it. RESULTS: A total of 96 adolescents completed the questionnaire, which was 76% of the eligible sample. The importance of friendliness of clinical staff and medical tests not to suffer any delay were the aspects that were considered most important to improve adolescents' hospitalization. If they had to share the hospital room, 86.4% (95% CI: 77.9-92.5) preferred to share with someone of the same age. Among the noteworthy suggestions to improve hospitalization were those involving leisure services in the hospital for adolescent patients (56.2% of the references). As a positive aspect of hospitalization, half (50.0%) referred to the relationship with the clinical staff. CONCLUSIONS: Adolescents express a hospital user perspective that should be taken into account in developing improvements in the health care they receive.