How nurses can apply spiritual care to improve the daily lives of people with learning disabilities and their families.

BACKGROUND: Most UK nursing research into spirituality overlooks its daily application in certain specialties, notably learning disability nursing. AIMS: Tz explore spirituality over the lifespans of people with learning disabilities and how spiritual care affects their quality of life. To provide practical examples for nurses on how to apply spiritual care in their daily practice. METHODS: A literature review conducted between January 2002 and July 2022) following recommendations from the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). Thomas and Harden's (2008) approach to thematic synthesis was used to structure 10 full-text articles into three key themes. FINDINGS: The three key themes were: the role of the nurse, the impacts on the individual, and family/carer perspectives. CONCLUSION: The nursing role in using spiritual care encompasses care planning an individual's spiritual activities, facilitating time alone, nurturing values such as self-acceptance, building therapeutic relationships, and advocating for progression in existing social structures and legislation.

Enabling patients with learning disabilities to self-manage lower limb lymphoedema.

Kathryn Taylor, Lymphoedema Clinical Nurse Specialist and Service Lead, Community Lymphoedema Service, Manchester Local Care Organisation (kathryn.taylor3@mft.nhs.uk), was runner-up in the Chronic Oedema Nurse of the Year category in the BJN Awards 2021.

How to get care right for people with learning disabilities in the emergency department: ask and engage.

Healthcare professionals are legally obliged to make reasonable adjustments to ensure that people, including those with learning disabilities, can access appropriate and timely care. However, although people with learning disabilities are high users of general health services, staff have little understanding of learning disability with a negative effect on patient experience and outcomes. This article explores some of the challenges experienced by people with learning disabilities in the emergency department (ED). Each section focuses on a different aspect of how to adjust the delivery of healthcare to meet their needs, along with exercises to ensure those adjustments have been understood and to provide practical learning outcomes. Personal stories are also used to identify examples of when and where these adjustments could have been used to provide equal healthcare in the ED.

Planning surgery for young people with learning disabilities.

Surgery for spinal deformity is complex and preparation involves a wide multidisciplinary team. For young people with learning disabilities, especially those who have behaviour that challenges, there are further considerations to ensure that their hospital stay is a positive experience and all their additional needs are met. Staff and carers need to be well informed and there must be effective communication. Evaluation of one patient's journey through pre-assessment, surgery and rehabilitation has identified the need for more input from learning disability liaison nurses in acute children's services.

An Exploration of Health Behaviors in a Mind-Body Resilience Intervention for Parents of Children with Developmental Disabilities.

OBJECTIVE: Parents of children with special needs such as learning and attentional disabilities (LADs) and autism spectrum disorder (ASD) are at high risk for stress-related disorders. The demands of parenting may compete with time for self-care behaviors such as physical activity, healthy eating, and adequate sleep. The objective was to describe health behaviors among this understudied population and assess the changes after a resilience intervention. METHODS: This was a secondary data analysis of a randomized controlled pilot virtual mind-body resilience intervention (Stress Management and Resiliency Training: A Relaxation Response Resiliency Program) trial for parents of children with LADs (n = 52) and ASD (n = 47). Parents completed self-report questionnaires about their weekly physical activity, eating behaviors, sleep duration, and fatigue before and after the 8-week intervention. Descriptive statistics and pre-post intervention effect sizes (Cohen's d) were calculated. RESULTS: Both parent groups reported suboptimal levels of health behaviors at baseline, but ASD parents reported lower health behaviors than LAD parents. LAD parents improved more on physical activity, with a higher percentage meeting recommendations at postintervention follow-up (d = 0.71) than ASD parents (d = 0.01). Eating behaviors showed small effect size improvements for both groups. Although sleep duration improved only with small or medium effect sizes for both groups, ASD parents rated their fatigue lower after the intervention (d = 0.81). CONCLUSION: Parents of children with special needs who participated in a virtual resilience intervention demonstrated suboptimal health behaviors. There is a need for targeted interventions for health behaviors that can promote resilience in these high-stress populations.

Mediating the interface between voluntariness and coercion: A qualitative study of learning disability nurses' work in medical examinations of people with intellectual disability.

AIMS AND OBJECTIVES: To gain knowledge of prevention and use of restraints in provision of medical care to people with intellectual disability. To this end, we explore how learning disability nurses in community services support the individual through medical examinations when facing resistance. BACKGROUND: Despite increased focus on limiting restraints, there is a lack of knowledge of how restraints are prevented and used in the delivery of physical health care to people with intellectual disability. DESIGN: We used an ethnographic comparative case design (n = 6). METHODS: The study was carried out in Norway. The analysis is based on data from semi-structured interviews, participant observation and document studies, in addition to health sociological perspectives on how to support individuals to make their body available for medical examination and intervention. The SRQR checklist was used. RESULTS: Learning disability nurses strove to ensure that examinations were carried out on the individual's terms, supporting the individual in three phases: preparing for the examination, facilitating the examination and, when facing resistance, intervening to ensure safe and compassionate completion of the examination. CONCLUSIONS: Supporting the person was a precarious process where professionals had to balance considerations of voluntariness and coercion, progress and breakdown, safety and risk of injury, and dignity and violation. Through their support, learning disability nurses helped to constitute the "resistant" individual as "a cooperative patient," whose body could be examined within the knowledge and methods of medicine, but who could also be safeguarded as a human being through the strain of undergoing examination. RELEVANCE TO CLINICAL PRACTICE: The article sheds light on how restraints are used in the medical examination and treatment of people with intellectual disabilities and demonstrates the significance of professional support workers' contributions, both in facilitating safe and efficient medical care and in ensuring the least restrictive and most compassionate care possible.

Managing health changes for people with a learning disability in a residential care home setting.

BACKGROUND: People with learning disability (LD) have complex comorbidities that develop at an earlier age than the general population and with which they are now living longer. Identification, assessment and management of these conditions is important but challenging. AIM: To develop resources with care staff to enable them to recognise and manage changes and decline in the health of a person with a LD. METHODS: Two resources (PIP-LD and CIRC) were developed through undertaking a literature review; networking with experts; and collaborating with staff in the care homes for people with a LD. Care staff then used these resourcesto review their residents. FINDINGS: The PIP-LD and CIRC were used in 39 care homes. The PIP-LD empowered staff to meet people's immediate health needs, and the CIRC helped them to recognise changes or a decline. CONCLUSIONS: The combined use of the PIP-LD and the CIRC enabled care staff to recognise the signs and symptoms of each person's comorbidities early, and to identify and manage changes when their health declined.

Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference.

BACKGROUND: In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children's units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children's hospitals or the nature and impact of this role. Here we report selected findings from a national mixed methods study of hospital care for children and young people with and without learning disabilities in England. The extent of learning disability nurse provision in children's hospitals is described and perceptions of staff working in hospitals with and without such provision is compared. METHODS: Semi-structured interviews were conducted with senior staff across 15 children's hospitals and an anonymous survey was sent to clinical and non-clinical staff with patient (children and young people) contact within these hospitals. The survey focused on six different elements of care for those with and without learning disability, with additional questions concerning identifying and tracking those with learning disabilities and two open-ended questions. RESULTS: Forty-eight senior staff took part in interviews, which included a subset of nine nurses and one allied health professional employed in a dedicted learning disability nurse role, or similar. Surveys were completed by 1681, of whom 752 worked in a hospital with dedicated learning disability nurse provision. We found evidence of limited and varied learning disability nurse provision which was valued by hospital staff and shown to positively impact their perceptions of being capable to care for children and young people with learning disabilities, but not shown to increase staff perceptions of capacity or confidence, or how children and young people are valued within the hospital, their safety or access to appointments. CONCLUSION: Further consideration must be given to how learning disability nurse roles within children's hospitals are best operationalised in practice to have the greatest impact on staff and families, as well as how we monitor and evaluate them to ensure they are being utilised effectively and efficiently. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20,461 (Phase 1), 31,336 (Phases 2-4).

Development and implementation of the Steps to Successful Palliative Care programme in residential care homes for people with a learning disability.

BACKGROUND:: For health and social care services to meet the needs of a growing and ageing population they need to respond appropriately. This response is only going to be possible if attention is paid to the individuals within it. This includes those people living with a learning disability (LD). AIMS:: To develop and implement a palliative care programme that would meet the needs of people with a LD, their families and care home staff. METHODS:: A palliative care programme and resource folder was created following a literature review and meetings with LD and specialist palliative care experts, organisations and care home managers. This folder was further developed collaboratively throughout the programme's implementation. FINDINGS:: 39 homes were recruited and 86% completed the programme. CONCLUSIONS:: This programme enabled the identification, assessment and management of the health and social care needs of people living and dying in a care home with a LD.

Assessing the perioperative communication needs of a patient with learning disabilities: An holistic case study approach.

Patients should be at the heart of everything we do. The aim should always be to achieve healthcare outcomes by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone: 'no decision about me, without me' (DH 2012). This article details a plan of care for an 18 year old male patient with a moderate level of learning disability who was scheduled for a tonsillectomy at a local NHS trust hospital. It focuses on the management of the patient's anxiety, nausea and pain. In accordance with the Health and Care Professions Council's code of confidentiality (HCPC 2014) the location and individual names of places and people concerned will not be disclosed. The patient presented at the pre-assessment appointment as having a learning disability consistent with a diagnosis of being on the autistic spectrum. More specifically, he had cognitive impairment which affected his ability to understand complex information. This, combined with a reduced ability to cope independently, formed the rationale for the attendance of a carer throughout his perioperative journey. According to the National Autistic Society (NAS) there are approximately 700,000 people with autism spectrum disorder (ASD) in the UK ie more than 1 in 100. Autism is a part of daily life for 2.8 million people (NAS nd).

Increasing participation of people with learning disabilities in bowel screening.

Learning disability nurses have a key role in addressing the health inequalities experienced by people with learning disabilities. People with learning disabilities are less likely to participate in bowel screening than other sectors of the population, despite there being evidence of this population being at an increased risk of developing bowel cancer. There are a range of barriers at individual and systemic levels that impact on participation in bowel screening by people with learning disabilities. Actions to address these barriers have been identified in the literature and learning disability nurses are a key agent of change in enabling people with learning disabilities to participate in the national screening programmes.

Peer support systems and professional identity of student nurses undertaking a UK learning disability nursing programme.

This practitioner based action research examines the implementation of the peer assisted study scheme (PASS) and individual peer mentoring in a cohort of first year undergraduate nursing students. It arose out of the desire of a small number of students in one UK university to transfer from the learning (intellectual) disabilities nursing field to other fields. The number of learning disabilities nurses is falling in England, and nursing shortages and student nurse retention generally is an international concern. The peer support was evaluated by 21 completed questionnaires. All the students had found the sessions they attended useful. Four themes emerged from the study. Students reported gains in knowledge around academic skills, placements and their chosen field of nursing; students felt more confident as a result of attending the sessions; students felt supported, and the importance of the peer mentor's interpersonal skills was highlighted; and finally students had valued meeting other students in their chosen field. These findings are discussed with reference to relevant literature.

Affected Aspects Regarding Literacy and Numeracy in Children Treated for Brain Tumors.

The aim of this study was to investigate the test results of reading speed, reading comprehension, word comprehension, spelling, basic arithmetic skills, and number sense (intuitive understanding of numbers) by children treated for brain tumors. This is a retrospective study based on medical records, including standardized academic tests. In the years of 2010 to 2014, all children in the area of Stockholm between 7 and 18 years (IQ <70) who had no major linguistic or motor difficulties after they had undergone treatment for brain tumors were offered a special education assessment one year after treatment, at school start, or the year before a transition from one stage to another. Our results indicate that children treated for a brain tumor are at risk of having difficulties in spelling, reading speed, and arithmetic and that the test performance may decline over years in arithmetic and spelling. Children diagnosed at age 0 to 6 years may need extra tutoring at school start, especially in basic arithmetic skills. In both reading and mathematics, many children perform better on tests focused on understanding than on tests focused on speed. Continuous special needs assessments including different aspects of literacy and numeracy, are important for understanding each child's specific needs.

'Advocate for your patients and do your best'.

Why did you become a nurse? I am a learning disability nurse who has spent a large part of my career working with children who have a learning disability and their families in the community. My experiences in supporting children have enabled me to consider their holistic needs across all areas of service and community provision.

An Intervention Supporting the Mental Health of Children with a Refugee Background.

This contribution proposes an intervention methodology that provides improved access to and effectiveness of mental health care facilities in Brussels, Belgium, for children and their families with a refugee and migration background. Migration is a complex process that involves several potential risk factors, and referral to mental health facilities is often ineffective. Consequently, optimal developmental opportunities for refugee children are hampered. The intervention is underpinned by a broad-based contextual perspective that seeks to bring to the surface and tackles the many challenges faced by these families. It takes into account the unique developmental context of refugee children, as well as the interplay with broader systems.

Perceptions of learning disability nurses and support staff towards people with a diagnosis of schizophrenia.

WHAT IS KNOWN ABOUT THE SUBJECT?: People with learning disability are more likely than the general population to develop schizophrenia. Personal recovery philosophies are based on positive attitudes and an optimism that recognizes and values people and their strengths and capacity to achieve goals. Little is known from previous studies about the illness perceptions of learning disability practitioners who work with people that experience both a learning disability and schizophrenia. The illness beliefs of learning disability practitioners about schizophrenia may mediate the potential for social exclusion and limit recovery outcomes. WHAT THIS STUDY/PAPER ADDS TO EXISTING KNOWLEDGE?: The findings show that the illness beliefs of learning disability practitioners and support workers regarding schizophrenia are pessimistic in terms of the consequences for people with schizophrenia and learning disability and their relatives as well as the chronic course of the illness. WHAT ARE THE IMPLICATIONS FOR CLINICAL PRACTICE?: This study identifies the nature of LD practitioner perceptions about schizophrenia and provides guidance about how personal recovery philosophies can be applied to the management of LD and schizophrenia. The beliefs of learning disability practitioners and support workers regarding schizophrenia need to be reframed to support better recovery outcomes and social inclusion for this group. The findings from this study can inform the development of training in bio-psycho-social models of schizophrenia, recovery approaches, family/carer interventions, clinical supervision, mentorship and reflection on clinical practice, which could be potentially useful strategies to help facilitate a reframing of beliefs. ABSTRACT: Background and purpose of study The prevalence of schizophrenia in people with learning disability is 3-4%. This is the first study to investigate the illness perceptions of learning disability (LD) practitioners towards people with schizophrenia. Methods Learning disability practitioners (n = 210) that work with people with LD and schizophrenia completed a modified version of the Illness Perception Questionnaire Schizophrenia Carers Version (IPQ-SCV). Descriptive and correlational analyses were conducted for all of the IPQ-SCV subscales. Results A significant positive correlation was found between consequences relative and consequences patient (0.495, P < 0.001), and a negative correlation was found between timeline episodic and timeline chronic (-0.243, P < 0.001) subscales. Discussion Consistent with previous evidence found regarding negative staff attitudes to schizophrenia recovery outcomes, course and chronicity, the current investigation has extended and confirmed these observations to staff working with individuals with comorbid schizophrenia and learning disability. Implications for practice This study identifies the nature of LD practitioner perceptions about schizophrenia and contributes to the development of the recovery philosophy in relation to the management of LD and schizophrenia. The findings inform the design of training modules in bio-psycho-social models of schizophrenia, recovery approaches, family intervention, clinical supervision and reflection. These can help LD practitioners to reframe their schizophrenia/LD illness beliefs.

Improving the care of children with learning disabilities in hospital.

Emeritus Professor Alan Glasper, from the University of Southampton, discusses care delivery for children with learning disabilities or autism who require a hospital stay, prompted by the recent Lenehan report.

Transition: the experiences of support workers caring for people with learning disabilities towards the end of life.

AIM: This research aims to provide a better understanding of the experience of support workers, as paid carers, caring for adults with learning disabilities (LDs) nearing the end of life in residential settings. BACKGROUND: In the past 100 years, people with LDs (also referred to as 'learning difficulty', 'mental retardation' and 'intellectual disability' internationally) are living longer with life expectancy approaching the population norm and more likely to die from diseases such as cancer, respiratory and vascular diseases. Community-based supported accommodation has become the foremost provider for people with LDs in their late 30 s or over in the UK. In the midst of the transition from living to dying for people with LDs, and even postdeath, the needs of support workers are often neglected against a background where most are unqualified, often with little experience of death and dying event, and with limited access to clinical supervision and education. METHODS: 3 focus groups involving 13 support workers were conducted at 3 independent service provider settings for people with LDs in London. FINDINGS: In recounting the experiences of these groups of support workers, 6 themes are described: strong emotional bond and identification; collaboration with other services; training issues around the extended role; support within the organisation; relationship with family/other residents; and grieving the 'loss'. CONCLUSIONS: Although support workers play a key role in meeting the end-of-life care needs of people with LDs in residential settings, their own needs are often neglected. There are still significant gaps in understanding these needs and practice development in this area.