The KIDSCREEN-27 scale: translation and validation study of the Slovenian version.

BACKGROUND: There are many methods available for measuring social support and quality of life (QoL) of adolescents, of these, the KIDSCREEN tools are most widely used. Thus, we aimed to translate and validate the KIDSCREEN-27 scale for the usage among adolescents aged between 10 and 19 years old in Slovenia. METHODS: A cross-sectional study was conducted among 2852 adolescents in primary and secondary school from November 2019 to January 2020 in Slovenia. 6-steps method of validation was used to test psychometric properties of the KIDSCREEN-27 scale. We checked descriptive statistics, performed a Mokken scale analysis, parametric item response theory, factor analysis, classical test theory and total (sub)scale scores. RESULTS: All five subscales of the KIDSCREEN-27 formed a unidimensional scale with good homogeneity and reliability. The confirmatory factor analysis showed poor fit in user model versus baseline model metrics (CFI = 0.847; TLI = 0.862) and good fit in root mean square error (RMSEA = 0.072; p(χ2) < 0.001). A scale reliability was calculated using Cronbach's α (0.93), beta (0.86), G6 (0.95) and omega (0.93). CONCLUSIONS: The questionnaire showed average psychometric properties and can be used among adolescents in Slovenia to find out about their quality of life. Further research is needed to explore why fit in user model metrics is poor.

Peripheral bone density measurement: An interdisciplinary initiative for improving health outcomes for people with learning disabilities.

Challenges exist in respect of people with intellectual disabilities who, with the increasing life expectancy, have a growing risk of age-related degenerative conditions. Changes in bone health are associated with increasing age and the bone health of people who have intellectual disabilities is well documented in the literature as being poor in comparison to the general population. A heel scan clinic was set up in an intellectual disability service as a service improvement initiative. There were 12 females and 17 males scanned using a heel scanner. Only 3 (10.3%) people with intellectual disabilities were in the normal bone mineral density (BMD) range. Peripheral BMD screening for people has been shown to provide important information about the bone health of people with intellectual disabilities which has prompted further treatment by general practitioners and has the potential to provide an accessible way to obtain information on the bone health of people with intellectual disabilities.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

BACKGROUND: Population-based data are presented on the nature of dying in intellectual disability services. METHODS: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. RESULTS: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. CONCLUSION: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

Effectiveness of school-based mental well-being interventions among adolescents: A systematic review.

AIMS: This systematic review aimed to identify school-based interventions for ensuring mental health and well-being of adolescents, synthesize existing interventions, and summarize the quality of identified studies. DESIGN: A systematic review, analysis, and synthesis were performed. DATA SOURCES: Search was performed in Cochrane Library, PsychARTICLES, Web of Science, CINAHL, and Medline. REVIEW METHODS: Literature search was performed in March 2019 using inclusion and exclusion criteria. PRISMA guidelines were followed. Identified records were reviewed by title, abstract, and by the full text by two independent researchers. Three authors independently made a quality assessment of the included studies. Included studies were extracted and synthesized. A systematic review was registered in PROSPERO (CRD42019128919). RESULTS: The initial search yielded 1,199 articles. Of them, 57 articles were included in the final analysis and synthesis. Only four studies were assessed as high quality. Identified themes were mental health and well-being, positive psychology, problem-solving and stress reduction, mindfulness, and physical activity. More than half (N = 32, 56.14%) interventions showed a positive outcome after implementation. Most of those interventions focused on positive psychology and mindfulness. CONCLUSION: Mental well-being is important for the healthy development of adolescents. Countries are aware that healthy adolescents will become healthy adults who will contribute to his/her community and will lower costs of the absence of work and treatments. Thus, they support and invest in interventions that prevent mental disorders. There is a need for developing multidimensional mental well-being interventions that are effective in low- and secondary-income countries. IMPACT: This study ensured rigorous methodology, followed PRISMA recommendations and evaluated quality of identified literature using the GRADE guidelines. A critical synthesis was performed to produce an integrated conceptualization of the evidence. The synthesis represents a list of effective school interventions for the promotion of adolescents' mental well-being.

End-of-life care in intellectual disability: a retrospective cross-sectional study.

BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown. AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population. DESIGN: Nationwide population-based postbereavement survey. PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths. RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population. CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

Mental well-being among nursing students in Slovenia and Northern Ireland: A survey.

Mental well-being is a key for successful and productive living of each individual. An imbalance can occur due to various stressors and environmental factors. Due to academic pressures, distance from home and financial burden, nursing students often meet with mental health problems. The objective of this study was to determine the mental well-being of nursing students in Slovenia and Northern Ireland, and to compare the results obtained. A descriptive cross-sectional study design was used. The survey was carried out in 2017 among nursing students in Slovenia and Northern Ireland using the Warwick-Edinburgh Mental Wellbeing Scale. The study included 90 students from Slovenia and 109 from Northern Ireland. Nursing students in both countries reported average level of mental well-being. Nursing students in Slovenia have significantly higher (p < 0.001) level of mental well-being than nursing students in Northern Ireland. There are some areas that demand special attention by nurse educators to support the mental well-being of students and the impact of this on their education. Further research needs to be undertaken to find out how to improve students' mental well-being and identify factors that are influencing mental well-being of nursing students.

Perceived caring attributes and priorities of preregistration nursing students throughout a nursing curriculum underpinned by person-centredness.

AIM AND OBJECTIVE: To explore preregistration nursing students' caring attributes development through a person-centred focused curriculum. BACKGROUND: Developing caring attributes in student nurses to the point of registration has historically been challenging. Globally, curricula have not yet demonstrated the ability to sustain and develop caring attributes in this population, despite its centrality to practice. DESIGN AND METHODS: This longitudinal cohort study tracked how University preregistration nursing students (N = 212) developed their caring attributes over the 3 years of their programme using repeated measures at the end of each year with the same cohort. The Caring Dimensions Inventory (35 item version with 25 caring items under three constructs (technical, intimacy and supporting) and 10 inappropriate or unnecessary construct items) was used and data analysed using Mokken scale analysis to create a hierarchy of actions that students deemed as caring. Repeated measures of analysis of variance enabled evaluation of changes in responses over time. RESULTS: Students developed their caring attributes throughout their programme, ranking 22 of 25 items as caring (with statistical significance) at the end of year 1, 18 at the end of year 2 and all 25 caring items at the end of their final year. No unnecessary or inappropriate construct items were ranked as caring at any data collection point. Participants consistently ranked assisting a person with an activity of living, listening to a patient and involving them in their care as the most caring actions. CONCLUSION: This study found caring attributes can not only be sustained, but can also be developed throughout a preregistration nursing education programme grounded in person-centredness. RELEVANCE TO CLINICAL PRACTICE: Internationally, caring attributes are challenging to develop and sustain throughout preregistration education, largely being diminished over time. Little published evidence evidences how person-centred frameworks are successfully integrated into preregistration nursing curricula to develop person-centred nurses.

Facilitation of child health research in hospital settings: The views of nurses.

AIMS AND OBJECTIVES: To explore the views of nurses towards child health research and to identify factors influencing their willingness to facilitate it in practice. BACKGROUND: Child health research in clinical practice is increasing throughout the UK. Nurses and midwives facilitate access to patients, enact research study protocols and have a critical role in parental decisions to enrol children into research studies. Little is known about their perception of this process. DESIGN: This study was a descriptive study design. METHODS: A newly designed questionnaire was completed in 2013 by 105 nurses in three neonatal and two children's units in two discrete acute hospital sites. RESULTS: Overwhelming support for clinical research was reported. Participants were motivated to facilitate research in order to improve patient care and contribute to the evidence base, but discouraged by external organisational factors and ethical concerns. Training, education and a dedicated team to support research were considered important. Misconceptions regarding consent and the allocation of treatment were reported. Participants raised particular concerns about trials of investigational medicinal product. CONCLUSION: Negative views of nurses towards research, combined with a lack of knowledge of research processes, governance and ethics, have the potential to threaten the success of clinical research studies. RELEVANCE TO CLINICAL PRACTICE: Focus on three main areas: staff education, improved communication and the demonstration of managerial commitment to clinical research.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities.

BACKGROUND AND OBJECTIVES: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals' perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training. METHODS: A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed. RESULTS: Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: 'information and preparation', 'provision of care' and 'family-centred care'. CONCLUSIONS: This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: a mixed methods study.

BACKGROUND: The lack of access to good quality palliative care for people with intellectual disabilities is highlighted in the international literature. In response, more partnership practice in end-of-life care is proposed. AIM: This study aimed to develop a best practice model to guide and promote partnership practice between specialist palliative care and intellectual disability services. DESIGN: A mixed methods research design involving two phases was used, underpinned by a conceptual model for partnership practice. SETTING/PARTICIPANTS: Phase 1 involved scoping end-of-life care to people with intellectual disability, based on self-completed questionnaires. In all, 47 of 66 (71.2%) services responded. In Phase 2, semi-structured interviews were undertaken with a purposive sample recruited of 30 health and social care professionals working in intellectual disability and palliative care services, who had provided palliative care to someone with intellectual disability. For both phases, data were collected from primary and secondary care in one region of the United Kingdom. RESULTS: In Phase 1, examples of good practice were apparent. However, partnership practice was infrequent and unmet educational needs were identified. Four themes emerged from the interviews in Phase 2: challenges and issues in end-of-life care, sharing and learning, supporting and empowering and partnership in practice. CONCLUSION: Joint working and learning between intellectual disability and specialist palliative care were seen as key and fundamental. A framework for partnership practice between both services has been developed which could have international applicability and should be explored with other services in end-of-life care.

Informed decision making regarding antenatal screening for fetal abnormality in the United Kingdom: a qualitative study of parents and professionals.

The aim of this study was to explore the views of parents and health professionals regarding informed decision making for antenatal screening for Down syndrome. This qualitative study was based on thematic analysis and conducted in England, where screening for Down syndrome is universally offered to all pregnant women. Four focus groups were held with pregnant women and/or their partners (n = 22), and another four groups were held with health professionals who offer antenatal screening (n = 22). Data were analyzed through coding of the transcribed focus group discussions and extraction of main themes. Extracted themes were: information overload, gaps in information, challenges in providing information and involvement of both parents in the decision. Parents and professionals believed that burdening parents with untimely information on a wide range of topics in the first trimester detracted from decision making about screening. Many parents also reported they were not sufficiently informed and wanted individualized discussion with a health professional. To ensure parents make informed decisions, information on screening should be provided at the appropriate time, with opportunity for personal discussion with a knowledgeable health professional.

Knowledge of blood transfusion among nurses.

AIMS AND OBJECTIVES: To measure nurses' knowledge of blood transfusion in the United Arab Emirates. BACKGROUND: Blood transfusion is a fundamental aspect of nursing practice and nurses' knowledge of it is essential for safe practice. Yet little is known about their blood transfusion practice and the knowledge that underpins it. The few studies that have investigated this topic previously have shown deficiencies in both knowledge and practice. To date, no such study has been carried out in the Middle East. DESIGNS: A descriptive, cross-sectional study. METHODS: A random sample of 248 nurses from two general hospitals in the Emirate of Abu Dhabi. The response rate was 94AE3%. A knowledge questionnaire comprising six sections and 49 items was developed for this study. Data were analysed using descriptive and inferential statistics. RESULTS: The overall knowledge scores of nurses were generally low ranging from 27-56 of a possible score of 70. Data analysis revealed knowledge deficits in several key aspects of blood transfusion. There were statistically significant relationship between nurses' knowledge and the work setting, the country where they trained and type of qualifications. CONCLUSION: This survey highlighted knowledge deficits which could be detrimental to patient safety. These results have implications for nursing education, policy and practice. RELEVANCE TO CLINICAL PRACTICE: Nurses have the responsibility to update their knowledge of and skills in carrying out blood transfusion. The tool developed in this study may be useful for educators and managers to identify gaps in knowledge and inform decisions to address them.

Nurses' practice of blood transfusion in the United Arab Emirates: an observational study.

AIMS: The aim of this study was to document nurses' practice of red blood cells transfusion. BACKGROUND: In the United Arab Emirates hospitals, nurses are responsible for the administration of blood transfusions. The safety and effectiveness of the transfusion process is dependent, among others, on the knowledge and skills of nurses who perform the procedure. Poor practice may result in avoidable complications that may threaten patients' safety. Published work indicated that nurses' practice varied across contexts and highlighted that patients received suboptimal care and incorrect transfusion that culminated in death or morbidity. In the United Arab Emirates, publications related to nurses' practice of blood transfusion are lacking. DESIGN: Descriptive. METHODS: Data were collected by means of non-participant structured observation. Data collection was undertaken in two general public hospitals in the Emirate of Abu Dhabi, United Arab Emirates. A random sample of 50 nurses from both hospitals was selected. Each nurse was observed once, from 10 minutes prior to blood collection until 15 minutes after initiating a transfusion. RESULTS: Forty-nine nurses (98%) were observed. The maximum obtained score was 13 points of a possible score of 21, and 75% of nurses scored below the 50% level. Practice deficiencies included improper patient identification, suboptimal vital signs documentation and invalid methods of blood warming. CONCLUSIONS: Patients in both hospitals were at risk of receiving incorrect blood, suffering unobserved transfusion reaction and acquiring bacterial infection. RELEVANCE TO CLINICAL PRACTICE: This study revealed inadequate practices that nurses and hospitals should strive to change to provide a safer and more effective care that would, hopefully, minimise the risks and maximise the benefits of blood transfusion. These findings also have implications for clinical supervision and nurse education.

Antenatal screening and informed choice: a cross-sectional survey of parents and professionals.

BACKGROUND: antenatal screening for fetal abnormalities is now offered to all pregnant women in many countries in Europe. Previous studies have shown that women and their partners may not make informed choices about screening. OBJECTIVES: to investigate knowledge of screening in both prospective parents and professionals offering screening in England, and to identify the ways in which pregnant women and their partners could be supported to make informed decisions about antenatal screening. DESIGN: cross-sectional survey design. Data were collected from July 2007 to January 2008 using two self-completion questionnaires. SETTING AND PARTICIPANTS: questionnaires were completed by: (i) pregnant women (n=100) and their partners (n=11), and (ii) midwives involved in offering antenatal screening (n=78). MEASUREMENTS: demographic data and survey responses were analysed using descriptive statistics and cross-tabulations. FINDINGS: some midwives lack accurate knowledge about screening and the conditions for which screening is offered. Parents wish to have information about screening at an earlier stage and would like the prospective father to be included in screening discussions. There is evidence that many parents do not perceive the second trimester ultrasound scan as a method of screening. Balanced information about the lives of people with Down syndrome would be seen as helpful by many parents. KEY CONCLUSIONS: further efforts need to be made to educate midwives more fully so that pregnant women and their partners are able to make informed choices about screening. Balanced information about the lives of people with Down syndrome should be available to prospective parents to support their decision making.

A meta-synthesis of pregnant women's decision-making processes with regard to antenatal screening for Down syndrome.

The diffusion of antenatal screening programmes for Down syndrome has triggered much discussion about their powerful potential to enhance pregnant women's autonomy and reproductive choices. Simultaneously, considerable debate has been engendered by concerns that such programmes may directly contribute to the emergence of new and complex ethical, legal and social dilemmas for women. Given such discussion and debate, an examination of women's decision-making within the context of antenatal screening for Down syndrome is timely. This paper aims to undertake a meta-synthesis of qualitative studies examining the factors influencing pregnant women's decisions to accept or decline antenatal screening for Down syndrome. The meta-synthesis aims to create more comprehensive understandings and to develop theory which might enable midwives and other healthcare professionals to better meet the needs of pregnant women as they make their screening decisions. Ten electronic health and social science databases were searched together with a hand-search of eleven journals for papers published in English between 1999 and 2008, using predefined search terms, inclusion and exclusion criteria, and a quality appraisal framework. Nine papers met the criteria for this meta-synthesis, providing an international perspective on pregnant women's decision-making. Twelve themes were identified by consensus and combined into five core concepts. These core concepts were: destination unknown; to choose or not to choose; risk is rarely pure and never simple; treading on dreams, and betwixt and between. A conceptual framework is proposed which incorporates these themes and core concepts, and provides a new insight into pregnant women's complex decision-making processes with regard to antenatal screening for Down syndrome. However, further research is necessary to determine whether or not the development of a model of decision-making may empower pregnant women in making choices about screening.