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Globally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this qualitative study aimed to explore the experiences of Irish parents receiving a postnatal diagnosis of Down syndrome. A qualitative research approach was used through semi structured interviews. Eight parents of a baby diagnosed postnatally with Down syndrome participated in this study sharing their stories of their postnatal diagnosis experiences. Five overarching themes emerged using a descriptive thematic analysis; 1. prenatal screening, pregnancy and delivery; 2. how the diagnosis was delivered; 3. setting and emotional experiences; 4. moving on with the postnatal diagnosis and 5. Future recommendations from parents' perspectives. This study highlighted the importance of the need for clinicians to ensure that partners are present at the time of the disclosure, that ample time is allocated and that verbal and written communications are provided to parents using less medical jargon when delivering the postnatal diagnosis of Down syndrome. These reasonable adjustments could alleviate parental anxiety at this critical juncture in their lives. Online resources and support forums were also identified as an integral support for families on discharge from the maternity centres and in the early months and years.

Objective: The aim of this systematic review was to examine the research evidence concerning the views and experiences of people with intellectual disabilities regarding their participation in and the effectiveness of relationship and sex education programmes. Methods: A systematic search of relevant electronic databases was conducted using defined inclusion criteria. All papers reviewed were from October 1998 to October 2018. PRISMA guidelines were followed in the design and reporting of the systematic review. Results: A total of eight studies published in English were included in the review. Data were analysed and the key themes identified were (1) designing and developing relationship and sex education programmes, (2) participating in relationship and sex education programmes and (3) perceived benefits of relationship and sex education programme participation. Conclusion: This review identified that people with intellectual disabilities are accessing relationship and sex education programmes and appear to find them helpful. Further research is required to investigate the extent to which programmes impact on long-term behaviours that enable the development of sustainable relationships and reduce the unintended consequences of sexual activities. Implications for policy, practice and future research developments are discussed.

Background: Providing care and support for a person with intellectual disabilities can be challenging and may negatively impact on family carers' health and wellbeing. A online support programme was co-designed with charitable organisations and family carers, to help meet the mental health and wellbeing needs of family carers. Objective: To test the acceptability of a newly developed online support programme for carers of people with profound and multiple intellectual disabilities. Methods: A sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents Scale was distributed to family carers across the United Kingdom and Ireland who had viewed the Carers-ID.com intervention. Participants were then invited to take part in an online interview. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol. Results: Seventy family carers (47 female, 23 male) responded to the acceptability survey, with 10 (7 female, 3 male) taking part in interviews. Carers expressed high levels of programme acceptability (mean = 75.43 out of 88). Six themes were generated from interviews with family carers; i) time is precious, ii) the breadth and depth of module content, iii) it was somebody's experience; it was meaningful, iv) won't work for everyone, v) representation: people I could identify with, and vi) module specific suggestions for future changes. Based on our triangulation, four areas of convergence were identified: programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability. Conclusions: To be acceptable, online interventions for carers of people with intellectual disability need to be accessible, understandable and easy to use, as carers' free time can be limited. It would be important to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise the importance of education, reasonable adjustments and medication reviews in supporting optimal medicines adherence in people with learning disabilities • To enhance your awareness of factors that contribute to suboptimal medicines adherence in people with learning disabilities • To acknowledge the importance of involving family or carers in supporting medicines adherence. Rationale and key points: People with learning disabilities often have long-term conditions that require the regular use of medicines. Medicines adherence can be particularly challenging in this population and support with taking medicines is often not provided in a way that meets people’s needs. Suboptimal medicines adherence can negatively affect the health outcomes of people with learning disabilities, which are already poorer than those of the general population. • Achieving optimal medicines adherence among people with learning disabilities requires a multi-component strategy that includes education, reasonable adjustments and medication reviews. • Factors that cause and/or contribute to suboptimal medicines adherence among people with learning disabilities include burdensome medicine regimens, medicines prescribed in unsuitable forms, overmedication and overprescribing, lack of medication reviews, lack of reasonable adjustments, suboptimal communication from healthcare professionals and suboptimal care coordination. • Family and carers are often those who administer medicines, so it is crucial to involve, educate and support them about the person’s medicine regimen so that they can help ensure the medicines are taken as prescribed. Reflective activity: ‘How to’ articles can help you to update your practice and ensure it remains evidence based. Apply this article to your practice. Reflect on and write a short account of: • How this article might improve your practice when supporting a person with a learning disability to take their medicines as prescribed. • How you could use this information to educate nursing students or colleagues on the appropriate actions to take to support a person with a learning disability to take their medicines as prescribed. [ABSTRACT FROM AUTHOR]

Background: Relationships and sexuality education (RSE) programmes are widely taught in schools, however for children and young people with intellectual disabilities, these programmes appear to be limited regarding information on relationships, informed choices and decision making. The purpose of this study was to seek the views and understanding of children and young people with intellectual disabilities, and those involved in their care and education, to identify best practice and approaches to the delivery on relationships and sexuality education. Methods: This study used a qualitative design with 37 pupils from five special schools from across the United Kingdom (UK) participating. In-depth semi-structured interviews were held online, or in person. All interviews were recorded and transcribed verbatim. Transcripts were anonymised, assigned a pseudonym and subjected to inductive thematic analysis. Findings: Four themes emerged from the data: (i) enthusiasm and inquisitiveness to acquire knowledge; (ii) dynamics of positive friendships; (iii) experiences and understanding of supportive relationships and sexuality; and (iv) valuing the exchange of knowledge and information. The findings highlight that children and young people with intellectual disabilities want education, support and information on matters relating to their relationships and sexuality. Conclusions: This is the largest study to date providing a voice to children and young people with intellectual disabilities regarding their relationships and sexuality. While special schools provide relationships and sexuality education, there is a requirement for a programme and resources specific to the needs of pupils with intellectual disabilities to be developed and evaluated. Such education should continue beyond school and be embedded in adult services. [ABSTRACT FROM AUTHOR]

Background: In recent years, there has been a growth of research on men's experiences of becoming fathers, most of which relates to a typically developing child without intellectual disabilities. While some studies have specifically explored the experiences of becoming a father of a child with an intellectual disability, there are few studies from an Irish context. Aim: The aim of this study was to present Irish fathers' narratives within the context of leading up to the diagnosis and the actual diagnosis of a child's intellectual disability. Method: A qualitative narrative inquiry design was used with ten fathers aged 31-48 years through semi-structured interviews. Results: This study is part of a larger study focusing on becoming a father of a child with an intellectual disability in Ireland. The findings related to finding out "something was wrong" with the child are presented. Conclusion: Fathers are emotionally affected by the diagnosis of a child's intellectual disability. Therefore, healthcare professionals need to be cognisant of the emotional upheaval that such a diagnosis can have on fathers and be sensitive to their needs in supporting them through this process.

Background: Down syndrome is a genetic condition that affects people of all races, nationalities and socioeconomic status. The incidence of Down syndrome in Ireland is estimated to be 1 in 546, with approximately 7,000 people with Down syndrome living in Ireland. While some families of individuals with Down syndrome may find it difficult to adapt, other families adapt successfully and some even thrive. The aim of this study, which is guided by the Resiliency Model of Stress, Adjustment and Adaptation was to examine linkages between family demands, family appraisal, family resources, family problem-solving communication and family adaptation in families of individuals with Down syndrome living in Ireland. Methods: "Ninety-five" parents (79 mothers, 16 fathers) of children with Down syndrome aged between 1 and 30 years completed six self-report measures designed to assess key dimensions of the Resiliency Model of Family Stress, Adjustment and Adaptation. Results: This study found that families of children with Down syndrome can adapt and become resilient. Factors found to positively influence this process include family hardiness and affirming family communication. Factors that negatively influenced this process were incendiary family communication and view of the condition impact. Conclusion: Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child's diagnosis. Early recognition of the difficulties being experienced by families and the provision of interventions that target and foster positive resiliency traits such as affirmative communication and the development of overall family hardiness are key to adaptation.

Rationale and key points: Why you should read this article: • To increase your awareness of the challenges of diagnosing constipation in people with learning disabilities • To understand the potential consequences, for people with learning disabilities, of untreated constipation • To revisit the assessments required to diagnose constipation in a person with a learning disability accurately. Constipation is a common health condition that, if not recognised and treated, can have major adverse effects on people’s health and well-being. People with learning disabilities have been shown to have a shorter life expectancy than the general population. Leading causes of premature death in this population group are respiratory disease, cardiovascular disease and gastrointestinal disorders including constipation. Yet, with timely assessments and appropriate interventions, constipation can be prevented or treated. • Consequences of constipation include increased laxative use, frequent hospital admissions and readmissions, suboptimal health outcomes and premature death. • The signs and symptoms of constipation can be challenging to ascertain in people with learning disabilities due notably to communication difficulties and diagnostic overshadowing. • Accurately diagnosing constipation in a person with a learning disability who shows behaviour of concern involves comprehensive and thorough assessments of their physical and mental health, behaviour, medicines and environment. Reflective activity: ‘How to’ articles can help you to update your practice and ensure it remains evidence based. Apply this article to your practice. Reflect on and write a short account of: • How this article might improve your practice when supporting the accurate diagnosis of constipation in a person with a learning disability who shows behaviour of concern. • How you could use this information to educate nursing students or colleagues to support the accurate diagnosis of constipation in a person with a learning disability who shows behaviour of concern. [ABSTRACT FROM AUTHOR]

This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers. [ABSTRACT FROM AUTHOR]

This article explores the experiences of the use of the Regional Health and Social Care Hospital Passport (Regional Hospital Passport) in Northern Ireland from the perspectives of adults with intellectual disabilities, family carers and health professionals. From semi-structured interviews three themes emerged: usefulness; facilitators; and barriers to the use of the Regional Hospital Passport. There were clear benefits of the Hospital Passport when used across hospital services and clinical practice settings such as dental and General Practices. There was participant agreement that communication and the person-centred care experiences were enhanced. Findings suggest that providers of health and social care services need to take greater responsibility and accountability for ensuring Regional Hospital Passports are promoted and used across all settings. There is a requirement to develop the wider use and uptake of hospital passports to support adults with intellectual disabilities, with potential for use with other patient groups. [ABSTRACT FROM AUTHOR]

Globally it is estimated that Down syndrome occurs in 1 in 800 live births (Bull 2020). It has also been estimated that the incidence of Down syndrome occurs in 1/444 live births in the Republic of Ireland. Given the prevalence of Down syndrome births in Ireland and the fact that care is provided by the majority of parents at home, this qualitative study aimed to explore the experiences of Irish parents receiving a postnatal diagnosis of Down syndrome. A qualitative research approach was used through semi structured interviews. Eight parents of a baby diagnosed postnatally with Down syndrome participated in this study sharing their stories of their postnatal diagnosis experiences. Five overarching themes emerged using a descriptive thematic analysis; 1. prenatal screening, pregnancy and delivery; 2. how the diagnosis was delivered; 3. setting and emotional experiences; 4. moving on with the postnatal diagnosis and 5. Future recommendations from parents' perspectives. This study highlighted the importance of the need for clinicians to ensure that partners are present at the time of the disclosure, that ample time is allocated and that verbal and written communications are provided to parents using less medical jargon when delivering the postnatal diagnosis of Down syndrome. These reasonable adjustments could alleviate parental anxiety at this critical juncture in their lives. Online resources and support forums were also identified as an integral support for families on discharge from the maternity centres and in the early months and years. [ABSTRACT FROM AUTHOR]

Dysphagia is a disorder of swallowing. The authors stress the importance of a comprehensive assessment leading to effective management and the involvement of a multidisciplinary team. People with the disorder [...]

Summary The age profile of Irish people with a learning disability has changed significantly prompting a call for the development of the role of the gerontological clinical nurse specialist. The [...]

A growing body of evidence suggests that people with intellectual disabilities are experiencing significant health inequalities when compared with their peers in the general population (Cassidy et al 2002, Kerr [...]

Summary Constipation is more common among people with intellectual disability compared with the general population. Causation falls into the three main categories related to lifestyle changes, physiological conditions and medication. [...]

Adults with intellectual disabilities experience significant physical and mental health needs when compared to their typically developing peers. Previous research evidences that many people with intellectual disabilities have negative encounters within acute hospitals. The aim of this systematic review was to identify the specific views and experiences of adults with intellectual disabilities when accessing acute hospital services arising from the available literature. The review commenced in June 2019 and was updated in May 2020. A systematic search of five electronic databases including CINAHL Plus, MEDLINE, Web of Science, SCOPUS and PsycINFO was undertaken. Studies published from 2014, peer‐reviewed, written in English and referred to adults with intellectual disabilities aged 18 plus and acute hospital settings were included. The Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines and the Critical Appraisal Skills Programme quality assurance checklist were used to review all selected papers. Five studies from a total of 421 were deemed suitable for inclusion in the review as the voices of adults with intellectual disabilities were present. Poor communication from healthcare staff towards adults with intellectual disabilities emerged in four studies while the use of the hospital passport and the intellectual disability liaison nurse to significantly improve the hospital experience for adults with intellectual disabilities was identified in two of the studies. Following a systematic and thematic analysis of the studies, three main overarching themes emerged: communication; information sharing; and compassion and respect. Despite the national and international focus on improving healthcare for people with intellectual disabilities, this review highlights lack of communication, inadequate information sharing and issues related to compassionate care and respect. The review identifies the possibility that an increased use of hospital passports and an extension of the intellectual disability liaison nursing roles may enhance the hospital experience for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]