The experiences of therapists providing psychological treatment for adults with depression and intellectual disabilities as part of a randomised controlled trial.

BACKGROUND: Health professionals were trained to deliver adapted psychological interventions for depression to people with learning disabilities and depression alongside a supporter. Exploring the delivery of psychological interventions can help increase access to therapy. METHOD: Twenty-seven participants took part in six focus groups, and the data were subject to a Framework Analysis. RESULTS: The structure and focus of the manualised therapies, and the use of specific techniques were perceived as key to service-user engagement. Supporters' involvement was valued by therapists if they had a good relationship and regular contact with the individual they supported. Regular clinical supervision was regarded as vital in understanding their role, assessing progress and delivering the interventions. CONCLUSIONS: The findings highlight that health professionals can embrace a focussed therapeutic role and increase access to psychological therapies for people with intellectual disabilities.

Sleep hygiene education and children with developmental disabilities: Findings from a co-design study.

This qualitative study develops a programme theory demonstrating the complexity embedded in sleep hygiene education (SHE) as an intervention to improve sleep problems in children with developmental disabilities. In co-design workshops, eight parents and six sleep practitioners deliberated themes developed from findings of an earlier exploratory study of stakeholder perceptions of SHE. A SHE tool underpinned by programme theory was developed evidenced by mid-range theories of change. Analytical themes were developed to explain the programme theory and the complexities of a successful SHE intervention: the need to legitimize children's sleep problems and consider the nature of customization, knowledge sharing, health expectation and impact of sleep service rationing and gaming strategies on implementation success. Policy and practice implications include a need to raise the public profile of children's sleep problems and promote parental involvement in intervention implementation. Further research is needed to test out this theory-driven framework for evaluating SHE.

Perceptions and Discourses Relating to Genetic Testing: Interviews with People with Down Syndrome.

BACKGROUND: The perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing. METHOD: Eight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing. RESULTS: Interpretative phenomenological analysis revealed two major themes with subthemes: (1) a devalued condition and a valued life and (2) a question of 'want?' Foucauldian discourse analysis highlighted two main discursive practices: (i) social deviance and (ii) tragedy and catastrophe of the birth of a baby with Down syndrome. CONCLUSIONS: The findings suggest that individuals with intellectual disabilities can make a valuable contribution to discussions surrounding the use of prenatal testing. Implications for clinical practice include the use of information about Down syndrome given to prospective parents, and the possible psychological impact of prenatal testing practices on individuals with Down syndrome.

Measles outbreak investigation process in low- and middle-income countries: a systematic review of the methods and costs of contact tracing.

Aim: The occurrence of measles outbreaks has increased, and previously measles-free countries are experiencing a resurgence, making measles elimination by 2020 unlikely. Therefore, outbreak prevention and rapid response strategies will need to be intensified. This systematic review therefore examines whether contact tracing (CT) as compared to no CT is an effective means of reducing measles spread during outbreaks in low- and middle-income countries (LMICs). Subject and methods: A systematic review was conducted by searching six databases (CINAHL, Global Health, Medline, Cochrane Library, Web of Science and PubMed). The 17 included articles were appraised using the Critical Appraisal Skills Programme checklists and analysed using a narrative synthesis. Results: CT is often used alongside mass communication strategies and hospital record checks. Interviewing measles cases to identify contacts, and considering everyone who has shared a space with a case as a contact are common CT methods. Also, CT can be done backwards and/or forwards with the measles case as the focal point of the investigation process. The cost per case of an outbreak response dominated by CT is high especially in terms of labour for the health sector and productivity losses for households. However, overall outbreak expenditure can be low if CT results in fewer and less severe measles cases and a short outbreak duration. Conclusion: CT data as a standalone and comparative active surveillance approach in LMICs is scarce. If CT is initiated early, it can prevent large outbreaks, thereby reducing the economic burden of measles and drive LMICs towards measles elimination. Supplementary Information: The online version contains supplementary material available at 10.1007/s10389-021-01590-2.

Antimicrobial stewardship and infection prevention interventions targeting healthcare-associated Clostridioides difficile and carbapenem-resistant Klebsiella pneumoniae infections: a scoping review.

OBJECTIVES: This study assessed antimicrobial stewardship (AMS) and infection prevention (IP) interventions targeting healthcare-associated Clostridioides difficile and carbapenem-resistant Klebsiella pneumoniae (CRKP) infections, their key outcomes and the application of behaviour change principles in these interventions. DESIGN: This scoping review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-analysis Extension for Scoping Reviews (PRISMA-ScR) guidelines while focusing on acute healthcare settings in both low-to-middle income and high-income countries. DATA SOURCES: The databases searched were MEDLINE, PubMed, Web of Science and CINAHL between 22 April 2020 and 30 September 2020. ELIGIBILITY: The review included peer-reviewed articles published in English language between 2010 and 2019. Studies that focussed on IP and/or AMS interventions primarily targeting C. difficile or CRKP were included. Studies that assessed effectiveness of diagnostic devices or treatment options were excluded from this review. DATA EXTRACTION AND SYNTHESIS: An abstraction sheet calibrated for this study was used to extract data on the main study characteristics including the population, intervention and outcomes of interest (antimicrobial use, compliance with IP interventions and risk for C. difficile and CRKP). A narrative synthesis of the results is provided. RESULTS: The review included 34 studies. Analysis indicates that interventions targeting C. difficile and CRKP include Education, Surveillance/Screening, Consultations, Audits, Policies and Protocols, Environmental measures, Bundles, Isolation as well as Notifications or alerts (represented using the ESCAPE-BIN acronym). The identified outcomes include antimicrobial use, resistance rates, risk reduction, adherence to contact precautions, hospital stay and time savings. AMS and IP interventions tend to be more adhoc with limited application of behaviour change principles. CONCLUSION: This scoping review identified the AMS and IP interventions targeting C. difficile and CRKP in healthcare settings and described their key outcomes. The application of behaviour change principles in AMS and IP interventions appears to be limited.

'This is Killing me Inside': The Impact of Having a Parent with Young-Onset Dementia.

This study explored the experience of young adults having a parent with young-onset dementia. In-depth interviews were undertaken with five participants aged between 23 and 36 years of age and these were analysed using interpretative phenomenological analysis. Participants were found to experience a number of stresses in relation to their parent's illness, many of which were linked to loss and guilt. Five main themes were identified related to relationship changes, shifts in roles and responsibilities, support for the non-affected parent, support for self and the impact of living with their own potential risk of dementia. These findings are discussed in relation to the existing literature and suggest that individuals with a parent with young-onset dementia have needs which service providers should consider in the wider context of young-onset dementia care.

An evaluation of an infection prevention link nurse programme in community hospitals and development of an implementation model.

BACKGROUND: Little evidence exists to show the exact impact of the link nurse role in promoting best practice in infection prevention. This paper is a report of the implementation and evaluation of a link nurse programme for community hospitals across one NHS organisation. AIM/OBJECTIVES: The main aim of the study was to implement and evaluate an infection prevention link programme. The study objectives were: 1) to develop materials for a bespoke infection prevention programme which incorporated education, behaviour change, reward and recognition and 2) to evaluate the implementation of the programme, and to learn about barriers and enablers to implementation. METHOD: Data were collected using semi-structured telephone interviews, contact logs and online course evaluation. Data were analysed using thematic analysis. FINDINGS: We identified four overarching themes that, collectively, construct a model for the implementation of the link nurse role in infection prevention. The themes are labelled as: selection process, support networks, essential roots, and turning points for success. DISCUSSION: This study contributes to understanding the contribution of link nurses in infection prevention. We suggest our findings are transferable to different settings, and the model provides guidance to support future link nurse programmes and promote best practice in infection prevention practice.

Diagnosis, disclosure, and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism.

BACKGROUND: Although there is extensive research examining parental experiences of assessment and diagnosis of autism, there is a paucity of research from the perspective of individuals with autism. METHOD: Semi-structured interviews were conducted with nine young people with high functioning autism who were capable of providing a verbal account of their perceptions of autism and diagnosis experiences. Data were analysed using interpretative phenomenological analysis. RESULTS: Diagnosis, and the disclosure of the diagnosis of autism, were embedded in respondents' perceptions of "having" autism. This superordinate theme included five themes: (i) disclosure delay, (ii) providing explanations, (iii) potential effects of labelling, (iv) disruptions and opportunities, and (v) acceptance and avoidance. CONCLUSION: In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration.

Working with uncertainty: A grounded theory study of health-care professionals' experiences of working with children and adolescents with chronic fatigue syndrome.

This grounded theory study explores conceptualisations of chronic fatigue syndrome/myalgic encephalomyelitis from semi-structured interviews with 10 health-care professionals working with children and adolescents. The findings suggest that a lack of a clear empirical understanding of chronic fatigue syndrome/myalgic encephalomyelitis leads to 'working with uncertainty', whereby health-care professionals utilise previous experiences to make sense of the condition and inform their clinical practice. How health-care professionals make sense of chronic fatigue syndrome/myalgic encephalomyelitis may influence the labels given to young people and the interventions they receive. The findings provide insight into a currently understudied area, and highlight potential avenues for further research and clinical practice.

'I'm really glad this is developmental': autism and social comparisons - an interpretative phenomenological analysis.

The present qualitative study comprised interviews with nine young people with autism (aged 16-21 years) about their perceptions of autism. Using interpretative phenomenological analysis, three underlying themes were illuminated, and all these formed the superordinate theme Making Comparisons: (a) Changes over time: 'I'm really glad this is developmental'; (b) Degrees of autism: 'They've got it really bad'; and (c) Degrees of ability: 'I'm not really disabled-disabled'. Such comparisons were not explicitly sought at the outset of the study, and instead emerged from their conceptualisations of the autism concept. When comparing how they perceived themselves now, and how they perceived themselves in the past, the young people viewed themselves more positively in the present. In addition, when making comparisons with other people with autism, they tended to locate themselves as being in a better position than others were. The perspective of being in a more fortunate position because of heightened abilities also emerged from the comparisons made with people who did not have autism. Furthermore, similar comparisons were made when autism was compared to disability, with autism being evaluated as being more favourable than what was termed 'proper' disability. The results of this study are discussed in relation to the existent social comparison literature.

Individual experiences of an acceptance-based pain management programme: an interpretative phenomenological analysis.

Acceptance of pain has been found to play an important role in adjusting to chronic pain, and the evidence-base is growing with regards to the effectiveness of acceptance-based interventions such as acceptance and commitment therapy, mindfulness and contextual cognitive behavioural therapy within pain management settings. Despite the growing interest in such interventions, previous studies into acceptance-based pain management programmes (PMPs) are quantitative and the exact processes at work during such programmes remain unknown. This study aims to add to previous quantitative research in the area by qualitatively exploring individual experiences of attending an acceptance-based PMP and identifying the key constituents of the programme that participants felt facilitated change. Semi-structured interviews (n = 6) were analysed using interpretative phenomenological analysis, and five themes emerged: I'm not alone, others understand my pain, Freedom from pain taking over, A new self - one with pain, Parts of the programme participants felt facilitated change and Exercise is possible. These findings are then considered in relation to past research and relevant constructs in the literature. Implications for future research and clinical practice are also discussed alongside participant reflections and suggested areas for improvement.

Parental bereavement and the loss of a child with intellectual disabilities: a review of the literature.

Inequalities in health care and other risk factors mean that children with intellectual disabilities are more likely to predecease their parents. Research on the effects on family members when a child with intellectual disability dies is sparse. In the present review, the authors describe 5 studies of bereavement in intellectual disability and then turn to general parental bereavement research to inform the field of intellectual disability. Questions for future research and some implications for services and professionals are discussed. In particular, professionals should be aware of dissatisfaction with care pre-loss, disenfranchised grief, and post-loss support needs of family members.