Randomised controlled feasibility study protocol of the Carers-ID online intervention to support the mental health of family carers of people with intellectual disabilities.

BACKGROUND: Family carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities. METHODS: Family carers (n = 120) will be randomised to receive the intervention (n = 60) or assigned to a wait-list control (n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick-Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants (n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. DISCUSSION: The Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention's effectiveness is warranted. TRIAL REGISTRATION: ClinicalTrials.gov : NCT05737823.

Down syndrome: Parental experiences of a postnatal diagnosis.

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.

Using a hospital passport from the perspective of adults with intellectual disabilities, family carers and health professionals: A qualitative study.

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.

The Experience of the Transition from a Student Nurse to a Registered Nurse of Kuwaiti Newly Graduated Registered Nurses: A Qualitative Study.

BACKGROUND: The experience of the transition from a student nurse to a registered nurse is a challenging period for newly graduated registered nurses. AIM: To explore newly graduated registered nurses' experiences of transition from student to registered nurse in clinical practice. DESIGN: A qualitative approach using semi-structured interviews conducted with 12 Kuwaiti newly graduated registered nurses. FINDINGS: The findings generated three themes: nursing support; education preparation; and psychological wellbeing. DISCUSSION AND CONCLUSION: This study is the first in Kuwait aiming to understand Kuwaiti national newly graduated registered nurses' transition experiences from student nurses to registered nurses in clinical practice. While the study revealed that newly graduated registered nurses received limited organisational support, the nursing policymakers in health care organisations and nursing education in Kuwait need to develop plans to improve newly graduated registered nurses' knowledge, skills and confidence and align them with the roles and realities of actual nursing practice, to improve retention. There is a need to change the societal image of nursing in Kuwait by highlighting the importance of the nursing profession within the health care delivery. The study recommends further research on newly graduated registered nurses' transition experiences into their new nursing roles to identify the factors behind their decision to stay or to leave, as this could offer possible solutions to address newly graduated registered nurses' retention in the future.

The association between ethnicity, socioeconomic deprivation and receipt of hospital-based palliative care for people with Covid-19: A dual centre service evaluation.

BACKGROUND: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. AIM: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. DESIGN: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. SETTING/PARTICIPANTS: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February-May 2020. RESULTS: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14-1.34) and lower levels of socioeconomic deprivation (IRR 1.61, 95% CI 1.36-1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87-1.06). CONCLUSIONS: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery.

Experiences of fathers regarding the diagnosis of their child with autism spectrum disorder: A narrative review of the international research.

AIM AND OBJECTIVES: The aim of this systematic review was to identify the views and experiences of fathers regarding their child's Autism Spectrum Disorder diagnosis. BACKGROUND: The diagnosis of a child's Autism Spectrum Disorder may be a stressful experience, creating uncertainty for parents. There has been a limited research focus on the views and experiences of fathers in relation to the diagnosis of Autism Spectrum Disorder of their child. DESIGN: A systematic literature review of quantitative, qualitative and mixed-methods research studies. DATA SOURCES: Academic Search Complete, CINAHL, MEDLINE and PsycINFO. METHODS: From August to October 2020, two authors independently performed a systematic data extraction and appraised the studies using a recognised instrument. The PRISMA checklist was used in the review. RESULTS: Nine papers met the inclusion criteria. Four themes emerged: (a) gradual recognition of developmental delay, (b) an emotional time, (c) coping and adaptation and (d) ongoing adjustments to the fathering role. CONCLUSIONS: Nurses and other professionals need to work collaboratively with fathers to improve their experiences and provide supports at the time of Autism Spectrum Disorder diagnosis.

Experiences of adults with intellectual disabilities accessing acute hospital services: A systematic review of the international evidence.

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.

The Design, Content and Delivery of Relationship and Sexuality Education Programmes for People with Intellectual Disabilities: A Systematic Review of the International Evidence.

There is growing empirical evidence regarding the relationship and sexuality experiences and needs of children, young people and adults with intellectual disabilities. A total of twelve papers met the inclusion criteria regarding relationship and sexuality education (RSE) programmes specific to the needs of this population. The preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines were followed and quality appraisal undertaken. The four themes identified were principles informing RSE programme development, design and content of RSE programmes, delivery of RSE programmes and evaluation of RSE programmes. The discussion presents areas that need to be addressed to ensure that people with intellectual disabilities, their families, carers and professionals are fully involved in the design and delivery of RSE programmes. Further research is required to identify the impact of the programmes and the sustained outcomes achieved. Recommendations are made regarding the activities required to enable the development of evidence-based and person-centred approaches to relationship and sexuality programmes.

Parents' experiences of transition from hospital to home of a child with complex health needs: A systematic literature review.

AIMS AND OBJECTIVES: To critically appraise primary research on the views and experiences of parents of children with complex health needs during the transition from hospital to home. BACKGROUND: Children with complex health needs frequently transition across and within healthcare systems, due to their age, care needs and ongoing health conditions. Repeated and unplanned admissions are significantly higher for children with complex health needs. Yet parents, as the primary providers of care, report being unsupported and unprepared during the transition from hospital back to home due to poor communication, inadequate discharge planning and education, resulting in stress and anxiety within the home environment. DESIGN: Systematic review following PRISMA guidelines. METHODS: A systematic search was completed of the databases CINAHL, MEDLINE, PsycINFO, EMBASE and the Cochrane Library Review between January 2009 and September 2019. Data were extracted, categorised and analysed using a thematic analysis approach. An adapted CASP qualitative assessment tool was utilised for quality assessment. All included articles were marked for validity and relevance to current research with an overall score from 0-20. RESULTS: A total of 13 studies of mixed quality were identified. CASP quality scores ranged from 13-18. Four themes emerged highlighting parents' experiences of the emotional processes, communication, coordination and support and resources when transitioning from hospital to home. CONCLUSIONS: Hospital discharge and transition from hospital to home is a complicated and at times frustrating process for parents of children with complex health needs. Parents report being exhausted and stressed during this often-challenging period of adjustment which was perceived as a difficult and emotional process. There is a clear lack of support available for parents both from hospital and community services.

The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.

AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD). BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society. DESIGN: A qualitative design was used to elicit the view and experiences of fathers. METHODS: A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper. RESULTS: The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research. CONCLUSIONS: This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively. RELEVANCE TO CLINICAL PRACTICE: This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure.

Characteristics, Symptom Management, and Outcomes of 101 Patients With COVID-19 Referred for Hospital Palliative Care.

Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 inpatients with confirmed COVID-19 referred to hospital palliative care. Patients (64 men, median [interquartile range {IQR}] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]) were most frequently referred for end-of-life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23), and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median [range] dose/24 hours) were opioids (morphine, 10 [5-30] mg; fentanyl, 100 [100-200] mcg; alfentanil, 500 [150-1000] mcg) and midazolam (10 [5-20] mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family, and clinicians. At March 30, 2020, 75 patients had died; 13 been discharged back to team, home, or hospice; and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum data set for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.

Recruitment settings, delivery contexts, intervention techniques and outcomes of health promotion programmes for young adults with intellectual and developmental disabilities: A systematic review.

BACKGROUND: People with intellectual and developmental disabilities (IDD) are at risk of developing long term health conditions, and a preventative health agenda research is emerging. However, little is known about the recruitment settings, delivery contexts, intervention techniques and outcomes of health promotion programmes for this population. Therefore, the aim of this review was to synthesize and evaluate these characteristics. METHOD: A systematic review of studies identified from multiple databases on healthy lifestyle interventions for adolescents and young people with IDD was conducted. Data were synthesized and evaluated using a logic model. Quality of rigour was also assessed. RESULTS: Sixteen geographically diverse studies were selected and evaluated. Participants were most commonly recruited from schools, with interventions typically taking place in a gym setting and involving physical activity training. CONCLUSIONS: This review indicates that physical activity and dietary interventions in people with IDD may lead to lifestyle changes, however more robust evidence is required. Educational settings are conducive, with settings beyond schools requiring further consideration.

Perceived importance and performance of clinical leadership in practice: A cross-sectional study of nurses and midwives of all grades.

AIM: To explore the differences in perceived importance and actual performance of clinical leadership for all grades of nurses and midwives engaged in clinical practice. BACKGROUND: Clinical leadership is central to the provision of person-centred care. However, little is known about how nurses and midwives perceive this in practice. METHODS: Data were collected on a sample of nurses and midwives in the Republic of Ireland, using a cross-sectional study design (n = 324). The clinical leadership needs analysis instrument was used to measure perceived importance and performance of clinical leadership in practice. Grades of nurses/midwives included; staff, manager, advanced practitioner and senior manager. RESULTS: Senior managers were more likely to report significantly higher scores than staff grades for perceived importance of Technology & Care Initiatives (p < .01) and Financial & Service Management (p = .02). Performance of Staff & Care Delivery was significantly higher for senior managers than staff grades [F(5,309) = 6.06 p < .01]. CONCLUSION: There was a mismatch between the perceived importance and actual performance of clinical leadership in practice between different grades of staff. IMPLICATIONS FOR NURSING MANAGEMENT: Leadership training for all grades and mentoring of staff grades can promote the building of confidence and empower staff in leading clinical practice.

Development and psychometric testing of the clinical leadership needs analysis (CLeeNA) instrument for nurses and midwives.

AIM: The aim of this study is to report the development and psychometric testing of the clinical leadership needs analysis instrument (CLeeNA). BACKGROUND: Limited emphasis is placed on the clinical leadership needs of nurses and midwives that are fundamental to supporting the delivery of high quality, safe patient care. METHODS: A development and validation study of CLeeNA was undertaken using cross-sectional data. A sample of 324 registered nurses and midwives completed the questionnaire using a 7-point adjectival scale. Principal component analysis was conducted to explore scale grouping of items (n = 103 items). RESULTS: Principal component analysis, item reduction and parallel analysis on the items of the instrument resulted in seven factors consisting of 56 items. These factors were identified as: Staff and Care Delivery; Technology and Care Initiatives; Self and Team Development; Standards of Care; Financial and Service Management; Leadership and Clinical Practice; Patient Safety and Risk Management. CONCLUSION: The identified factors are reflective of an ever-changing health care environment. IMPLICATIONS FOR NURSING MANAGEMENT: Potentially, after further testing, this instrument could be used by nursing management and educators to measure clinical leadership needs, inform the design of clinical leadership training programmes and provide valuable information about health care leadership development.

Nurses' knowledge of constipation in people with learning disabilities.

Constipation is considered a preventable problem in health care, yet this condition has received little attention in terms of preventive interventions and management in people with intellectual disabilities. While constipation is acknowledged as an important general health issue for this population group, symptoms are frequently masked as the intellectual disability often takes precedence, resulting in diagnostic overshadowing. Underestimations of the condition may result in delays in recognition and treatment which are further compounded by an inability among people with an intellectual disability to express discomfort verbally. Long-term, untreated constipation can have serious and potentially life-threatening consequences if symptoms go unrecognized or are not treated promptly. Therefore, all registered nurses treating people with intellectual disabilities must possess an in-depth knowledge of the condition to be able to prevent and manage this common condition.