The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study.

OBJECTIVE: To identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals. DESIGN: A mixed-methods study involving interviews, questionnaires and participant observation (July 2011-March 2013). SETTING: Six acute NHS hospital trusts in England. METHODS: Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments. RESULTS: Data collected included staff questionnaires (n=990), staff interviews (n=68), interviews with adults with intellectual disabilities (n=33), questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities, and expert panel discussions (n=42). Hospital strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice often depended on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments, and lack of allocation of additional funding and resources. Key enablers were the Intellectual Disability Liaison Nurse and the ward manager. CONCLUSIONS: The evidence suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. Further research is recommended that describes and quantifies the most frequently needed reasonable adjustments within the hospital pathways of vulnerable patient groups, and the most effective organisational infrastructure required to guarantee their use, together with resource implications

Psychosocial support for families of children with neurodisability who have or are considering a gastrostomy: the G-PATH mixed-methods study

Background Evidence reviews recommend consistent and structured support for children with neurodisability and their caregivers in care pathways in which professionals recommend a gastrostomy feeding tube. To date, and to our knowledge, no research has shown how these recommendations have been implemented. Objectives The objectives were to describe different exemplar models of psychosocial support and provide an estimate of their resources and costs. Design This was a mixed-methods study involving (1) a web-based survey, (2) a qualitative, collective case study of psychosocial support provision in four services and (3) an estimate of costs and preference through a willingness-to-pay study. Setting Four service configurations in different locations in England and Scotland. Participants Participants were staff who responded to a survey (n = 67) and interviewees (staff, n = 58; parents/children, n = 29). Findings Psychosocial support was rarely formalised or documented; it was delivered by different members of the multidisciplinary team, rather than by designated staff, and it was often integrated into appointments dominated by clinical care. Parents expressed different needs for support but reported little opportunity to discuss emotional aspects. Psychologists were not routinely involved and, in general, families were underserved by psychosocial services. Professionals constructed families’ need for psychosocial support in terms of their own roles and the management of risk. Mechanisms for integrating and delivering support were identified, including models of care that linked community and tertiary health services and integrated health and education through pooled budgets. Although generally valued by both staff and parents, peer-to-peer parent support was not consistently offered. Barriers included concerns about confidentiality and appropriately matching parents. Parents participated as members of a feeding committee at one site. Three analytical constructs described the provision of psychosocial support: ‘hidden work’, expressing emotional vulnerability and negotiations around risks and values. The cost-of-support study found that there was a mean of 2.25 appointments (n = 8 parents or carers) over the previous 12 months. The cost of health-care professionals’ time spent on providing psychosocial support ranged from £0.00 to £317.37 per child per year, with an average cost of £76.42, at 2017 prices. In the willingness-to-pay study the median rank of enhanced support, involving the opportunity to see a psychologist and parental peers, was significantly higher than that of usual care (n = 96 respondents, both carers and professionals, who completed rating of the service; p < 0.001). Limitations It proved difficult to disseminate a national survey, which resulted in a small number of returns, and to cost the provision of psychosocial support, which we designated as ‘hidden work’, owing to the lack of recording in clinical systems. Moreover, estimates were based on small numbers. Conclusions Parent interviews and the willingness-to-pay study demonstrated a preference for enhanced psychosocial support. The study suggests that there is a need for services to formally assess families’ needs for psychosocial support to ensure that provision is planned, costed and made explicit in care pathways. Personalised interventions may assist with the targeting of resources and ensuring that there is an appropriate balance in focus on both clinical care and psychosocial support needs in relation to and following treatment. Future work More work is needed to develop tools to assess families’ needs for psychosocial support and the effectiveness of training packages to strengthen team competency in providing support. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 38. See the NIHR Journals Library website for further project information

Developing a training course to teach research skills to people with learning disabilities: “It gives us a voice. We CAN be researchers!”.

Background Within learning disability research, it is important to involve people with learning disabilities at all stages, but there are limited opportunities for them to learn about the research process or to gain research skills. Method An eight-session research training course for people with learning disabilities was developed and piloted at a university in London. The focus was on understanding the research process and gaining practical skills in collecting, analysing and presenting research data. Training methods were experimental, with an emphasis on learning by experience in a “fun” way. Results Ten people with learning disabilities completed the course, showing great enthusiasm and commitment. During the final sessions, students developed and conducted their own research projects, choosing “Employment” as their research topic. The training methods were well received. Benefits included an increase in confidence and new work opportunities for several of the students. This paper was co-authored by the tutors and most of the course graduates. Conclusion It is possible for people with learning disabilities to become skilled researchers, but in order to do so, it is important that they have adequate training opportunities. Funding should be made available for more such courses

Drooling Reduction Intervention randomised trial (DRI): comparing the efficacy and acceptability of hyoscine patches and glycopyrronium liquid on drooling in children with neurodisability

Objective: Investigate whether hyoscine patch or glycopyrronium liquid is more effective and acceptable to treat drooling in children with neurodisability. Design: Multicentre, single-blind, randomised controlled trial. Setting: Recruitment through neurodisability teams; treatment by parents. Participants: Ninety children with neurodisability who had never received medication for drooling (55 boys, 35 girls; median age 4 years). Exclusion criteria: medication contraindicated; in a trial that could affect drooling or management. Intervention: Children were randomised to receive a hyoscine skin patch or glycopyrronium liquid. Dose was increased over 4 weeks to achieve optimum symptom control with minimal side-effects; steady dose then continued to 12 weeks. Primary and secondary outcomes: Primary outcome: Drooling Impact Scale (DIS) score at week-4. Secondary outcomes: change in DIS scores over 12 weeks, Drooling Severity and Frequency Scale and Treatment Satisfaction Questionnaire for Medication; adverse events; children’s perception about treatment. Results: Both medications yielded clinically and statistically significant reductions in mean DIS at week-4 (25.0 (SD 22.2) for hyoscine and 26.6 (SD 16) for glycopyrronium). There was no significant difference in change in DIS scores between treatment groups. By week-12, 26/47 (55%) children starting treatment were receiving hyoscine compared with 31/38 (82%) on glycopyrronium. There was a 42% increased chance of being on treatment at week-12 for children randomised to glycopyrronium relative to hyoscine (1.42, 95% CI 1.04 to 1.95). Conclusions: Hyoscine and glycopyrronium are clinically effective in treating drooling in children with neurodisability. Hyoscine produced more problematic side effects leading to a greater chance of treatment cessation

Analysis of the question–answer service of the Emma Children’s Hospital information centre

The information centre of the Emma Children’s Hospital AMC (EKZ AMC) is a specialised information centre where paediatric patients and persons involved with the patient can ask questions about all aspects of disease and its social implications. The aim of the study was to evaluate the question–answer service of this information centre in order to determine the role of a specialised information centre in an academic children’s hospital, identify the appropriate resources for the service and potential positive effects. For this purpose, a case management system was developed in MS ACCESS. The characteristics of the requester and the question, the time it took to answer questions, the information sources used and the extent to which we were able to answer the questions were registered. The costs of the service were determined. We analysed all questions that were asked in the year 2007. Fourteen hundred thirty-four questions were asked. Most questions were asked by parents (23.3%), healthcare workers (other than nurses; 16.5%) and nurses (15.3%). The scope of the most frequently asked questions include disease (20.2%) and treatment (13.0%). Information on paper was the main information source used. Most questions could be solved within 15 min. Twelve percent to 28% of total working hours are used for the question–answer service. Total costs including staff salary are rather large. In conclusions, taking over the task of providing additional medical information and by providing readily available, good quality information that healthcare professionals can use to inform their patients will lead to less time investment of these more expensive staff members. A specialised information service can anticipate on the information need of parents and persons involved with the paediatric patient. It improves information by providing with relatively simple resources that has the potential to improve patient and parent satisfaction, coping and medical results. A specialised information centre is therefore a valuable and affordable asset to an academic children’s hospital

Shared decision-making with people with intellectual disabilities in the last phase of life : a scoping review

Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life

The Third-party Model: Enhancing Volunteering through Governments, Corporations and Educational Institutes

Volunteering is perceived as important for creating social capital and civil society, and therefore has become a fundamental part of social policies across most Western countries. In this article, we examine the involvement of governments, corporations and educational institutes in encouraging volunteering, and pinpoint their role in developing volunteering circles. Based on essential concepts presented here (volunteerability and recruitability), we develop the third-party model, and show how third parties get involved. We identify new ways in which these parties can enhance volunteering, and discuss their impact on volunteerability and recruitability. The potential negative impacts of volunteerism and ways in which these can be ameliorated are also acknowledged. Finally, issues that arise due to such involvement are also discussed, thereby offering an important contribution to social policy research in the area of volunteerism

The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study.

BACKGROUND: There has been evidence in recent years that people with intellectual disabilities in acute hospitals are at risk of preventable deterioration due to failures of the healthcare services to implement the reasonable adjustments they need. The aim of this paper is to explore the challenges in monitoring and preventing patient safety incidents involving people with intellectual disabilities, to describe patient safety issues faced by patients with intellectual disabilities in NHS acute hospitals, and investigate underlying contributory factors. METHODS: This was a 21-month mixed-method study involving interviews, questionnaires, observation and monitoring of incident reports to assess the implementation of recommendations designed to improve care provided for patients with intellectual disabilities and explore the factors that compromise or promote patient safety. Six acute NHS Trusts in England took part. Data collection included: questionnaires to clinical hospital staff (n = 990); questionnaires to carers (n = 88); interviews with: hospital staff including senior managers, nurses and doctors (n = 68) and carers (n = 37); observation of in-patients with intellectual disabilities (n = 8); monitoring of incident reports (n = 272) and complaints involving people with intellectual disabilities. RESULTS: Staff did not always readily identify patient safety issues or report them. Incident reports focused mostly around events causing immediate or potential physical harm, such as falls. Hospitals lacked effective systems for identifying patients with intellectual disabilities within their service, making monitoring safety incidents for this group difficult.The safety issues described by the participants were mostly related to delays and omissions of care, in particular: inadequate provision of basic nursing care, misdiagnosis, delayed investigations and treatment, and non-treatment decisions and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. CONCLUSIONS: The events leading to avoidable harm for patients with intellectual disabilities are not always recognised as safety incidents, and may be difficult to attribute as causal to the harm suffered. Acts of omission (failure to give care) are more difficult to recognise, capture and monitor than acts of commission (giving the wrong care). In order to improve patient safety for this group, the reasonable adjustments needed by individual patients should be identified, documented and monitored

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