Transforming identities through Transforming Care : How people with learning disabilities experience moving out of hospital

This is the peer reviewed version of the following article: Annabel Head, Helen Ellis-Caird, Luisa Rhodes, and Kathie Parkinson, ‘Transforming identities through Transforming Care: How people with learning disabilities experience moving out of hospital’, British Journal of Learning Disabilities, Vol. 46 (1): 64-70, March 2018, which has been published in final form at https://doi.org/10.1111/bld.12213. Under embargo until 11 January 2020. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.Accessible Summary People with learning disabilities talked about what it was like to move out of hospital. People talked about how important their relationships with other people were. People wanted to feel comfortable with new members of staff so that they felt safe and happy in their new home. People talked about how moving out of hospital changed how they thought about themselves. When they were in hospital, people sometimes thought that they were “bad.” But after they moved, some people started to think that they were a different person. It is important for everyone to think about how they talk to people when they are in hospital, and when they have moved out. People can do really well living in their own home, rather than in hospital. Abstract: Background People with learning disabilities are moving out of hospitals as part of the Transforming Care programme, although thus far their views on how they have experienced this have not been researched. Materials and Methods A qualitative design was used to explore how people with learning disabilities experienced moving as part of Transforming Care. Eleven people took part in semi-structured interviews; they were supported by Key Support People (n = 9) who knew them well. A social constructionist Grounded Theory approach was used in analysis. Results and Discussion People reported that their relationships with other people, including friends, family and staff, played a significant role in how they experienced the move. Moving was also an opportunity for people to shift their ideas about who they were as a person and opened up a wider array of stories about their identity. Conclusions A number of recommendations are discussed, relevant for staff working in this field to support positive transitions out of hospital.Peer reviewedFinal Accepted Versio

How People With Intellectual Disabilities Experience Transitions Through the Transforming Care Programme: a Grounded Theory Study

Following the exposure of abuse of people with Intellectual Disabilities (ID) at Winterbourne View, the Government launched the Transforming Care programme, to support people to transition out of hospital into their own home. A literature review revealed limited research into people with ID’s experiences of transitioning. The study aimed to explore how transitions through Transforming Care were experienced. Eleven people with ID were interviewed about their experiences, with ten nominating a Key Support Person to be interviewed alongside them on a second occasion. Interviews were analysed using a Social Constructionist Grounded Theory methodology. The model demonstrated that participants experienced transitioning as a highly complex process of managing change. In hospital, how participants were seen by significant others and how they saw themselves resulted in a ‘restricted story.’ In moving to the community, participants and those around them were able to shift ideas about who they were, allowing for a ‘widening out’ of their story. Participants discussed seeking a sense of safety in new relationships, managing loss, and going through uncertainty as part of the process of transitioning. The findings of this study demonstrate that transitioning is not a single event, but an ongoing process over time. Clinical implications include ensuring that people with ID feel prepared about their move and the importance of staff understanding peoples’ behaviours within a wider context

Adapting photovoice to explore identity expression amongst people with intellectual disabilities who have limited or no verbal communication

© 2021 The Authors. This is an open access article under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited.People with intellectual disabilities who have limited, or no verbal communication can be involved in research. Ethnographic observations and interview techniques can work together with photovoice. More research needs to be completed directly involving people with intellectual disabilities. Abstract: Background Inclusive research requires adapting methodologies to meet the needs of people with all degrees of intellectual disabilities. However, it must also balance this with the requirements of academic research. Building from previous research a study was completed to illustrate how photovoice could not only be adapted to meet the needs of people with intellectual disabilities who have limited or no verbal communication but to also explore how they express their identity. Methods A qualitative multiple case study method was used to explore identity expression amongst three participants with intellectual disabilities and limited or no verbal communication. The methodology integrated ethnographic observations, photovoice and interview techniques. Findings Integrating the ethnographic observations, photovoice and interview techniques offered families and carers the opportunity to become curious about participants' identities, and this methodology was considered valuable in getting to know more about the person. Conclusions It is hoped that through conducting research that directly involves people with intellectual disabilities, more creative and inclusive methods can be explored, verified and applied across various research contexts.Peer reviewedFinal Published versio

“It was really good, she sort of took some words what happened, like what I would say”: Adapting dyadic interview techniques to capture the stories of marginalised voices in research

© Copyright 2000-2021 The British Psychological Society. This is the accepted manuscript version of an article which has been published in final form in QMiP Bulletin Issue 31Qualitative research continues to rely heavily on verbal language from solely the participant, which often omits the lived experiences of many people across a range of populations. This paper describes adaptations to an established research methodology, dyadic interviewing, which aims to open up possibilities of hearing unheard voices. Namely, we present an extension to the dyadic interview method as outlined by Caldwell (2014), in which the clinical systemic technique of Internalised Other interviewing is used to further focus in on the perspective of the participant. This method has been used by the authors in a research project with people with intellectual disabilities (Head et al., 2018), which gave people who may not have otherwise participated an opportunity to have their voices heard. A critical analysis of the use of the method is presented, with practical advice on its use. The authors argue that the methodology could be used with a number of populations in clinical and social research.Peer reviewedFinal Accepted Versio

“The whole thing is beyond stress”: Family perspectives on the experience of hospitalisation through to discharge for individuals with severe learning disabilities and complex needs

© 2024 The Authors. British Journal of Learning Disabilities published by John Wiley & Sons Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Background People with severe learning disabilities and complex needs are more likely to experience delayed discharge from hospital; however, there is little research into their experience in hospital and as they move out as part of the Transforming Care Programme. Methods Six family members of people with complex needs who had moved out of hospital took part in four focus groups co-facilitated with an expert-by-experience consultant. Participants' relatives had hospital admissions that ranged from 6 weeks to 11 years. Transcripts were analysed using reflexive thematic analysis. Additional reflections are included from an expert-by-experience consultant to capture their unique perspective. Results Family members reported stories of abuse in hospital and parallel experiences of institutionalisation and trauma, resulting in long-lasting impacts on themselves and their relative. Family members felt let down and undervalued by professionals. They described relief when their relatives moved out of hospital, but there were on-going difficulties accessing the right support in the community and so stability felt fragile. Conclusions Key recommendations to support community living include respecting family members' expertise, improving partnership working and offering psychological support for family members and people with complex needs post-discharge.Peer reviewe

Mapping stakeholders to maximise the impact of research on health inequalities for people with learning disabilities: the development of a framework for the Making Positive Moves study

© 2024 The Authors. British Journal of Learning Disabilities published by John Wiley & Sons Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (CC BY), https://creativecommons.org/licenses/by/4.0/Background: People with learning disabilities experience health and social inequalities, and research that could improve health services may not be implemented in real‐life settings. Building stakeholder networks that can share and implement research findings may address this. This paper presents a framework for building a stakeholder network that maximises the likelihood of research recommendations being implemented in practice. This was developed as part of the ‘Making Positive Moves’ (MPM) study, which explores the experiences of people with learning disabilities following discharge from a residential stay within a hospital inpatient setting. Methods: We reviewed the literature on existing theoretical frameworks to support the development of a model for dissemination of the MPM findings. Stakeholder categories were identified through consultation with the MPM researchers, experts by experience and the steering group and a hub and spoke model to represent all stakeholder categories was created. These categories include person moving; family of the person moving; specialist schools; social care; care providers; regulators; third sector organisations; policy organisations; academic community; and NHS professionals. After establishing the categories, we consulted with people with learning disabilities and other stakeholders and conducted online searches to create a stakeholder database. Through information gathering and direct contact with stakeholders, we assessed levels of interest, power and engagement to determine which stakeholders to prioritise in our dissemination activities. The Stakeholder Wheel was created to present the data captured within the database and engagement profiles in an illustrative way. Findings: We use two stakeholder sub‐categories, user‐led organisations and care providers, to demonstrate the methodological approach. The examples illustrate how a scoring system helped us to identify high‐priority stakeholders who we then contacted to collaborate within developing our dissemination strategy to maximise the impact of the MPM research findings. Conclusions: We developed a framework to map stakeholders for the MPM study and enable targeted dissemination to increase the impact of the research. This approach has the potential to reduce health inequalities among people with learning disabilities by increasing the awareness of and ability to implement evidence‐based recommendations in real‐life settings. The stakeholder mapping framework could be applied to research projects associated with learning disabilities to bridge the gap between research and practice and reduce health inequalities.Peer reviewe

Recommendations for the design of laboratory studies on non-target arthropods for risk assessment of genetically engineered plants

This paper provides recommendations on experimental design for early-tier laboratory studies used in risk assessments to evaluate potential adverse impacts of arthropod-resistant genetically engineered (GE) plants on non-target arthropods (NTAs). While we rely heavily on the currently used proteins from Bacillus thuringiensis (Bt) in this discussion, the concepts apply to other arthropod-active proteins. A risk may exist if the newly acquired trait of the GE plant has adverse effects on NTAs when they are exposed to the arthropod-active protein. Typically, the risk assessment follows a tiered approach that starts with laboratory studies under worst-case exposure conditions; such studies have a high ability to detect adverse effects on non-target species. Clear guidance on how such data are produced in laboratory studies assists the product developers and risk assessors. The studies should be reproducible and test clearly defined risk hypotheses. These properties contribute to the robustness of, and confidence in, environmental risk assessments for GE plants. Data from NTA studies, collected during the analysis phase of an environmental risk assessment, are critical to the outcome of the assessment and ultimately the decision taken by regulatory authorities on the release of a GE plant. Confidence in the results of early-tier laboratory studies is a precondition for the acceptance of data across regulatory jurisdictions and should encourage agencies to share useful information and thus avoid redundant testing

Safety and efficacy of the ChAdOx1 nCoV-19 vaccine (AZD1222) against SARS-CoV-2: an interim analysis of four randomised controlled trials in Brazil, South Africa, and the UK.

BACKGROUND: A safe and efficacious vaccine against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), if deployed with high coverage, could contribute to the control of the COVID-19 pandemic. We evaluated the safety and efficacy of the ChAdOx1 nCoV-19 vaccine in a pooled interim analysis of four trials. METHODS: This analysis includes data from four ongoing blinded, randomised, controlled trials done across the UK, Brazil, and South Africa. Participants aged 18 years and older were randomly assigned (1:1) to ChAdOx1 nCoV-19 vaccine or control (meningococcal group A, C, W, and Y conjugate vaccine or saline). Participants in the ChAdOx1 nCoV-19 group received two doses containing 5 × 1010 viral particles (standard dose; SD/SD cohort); a subset in the UK trial received a half dose as their first dose (low dose) and a standard dose as their second dose (LD/SD cohort). The primary efficacy analysis included symptomatic COVID-19 in seronegative participants with a nucleic acid amplification test-positive swab more than 14 days after a second dose of vaccine. Participants were analysed according to treatment received, with data cutoff on Nov 4, 2020. Vaccine efficacy was calculated as 1 - relative risk derived from a robust Poisson regression model adjusted for age. Studies are registered at ISRCTN89951424 and ClinicalTrials.gov, NCT04324606, NCT04400838, and NCT04444674. FINDINGS: Between April 23 and Nov 4, 2020, 23 848 participants were enrolled and 11 636 participants (7548 in the UK, 4088 in Brazil) were included in the interim primary efficacy analysis. In participants who received two standard doses, vaccine efficacy was 62·1% (95% CI 41·0-75·7; 27 [0·6%] of 4440 in the ChAdOx1 nCoV-19 group vs71 [1·6%] of 4455 in the control group) and in participants who received a low dose followed by a standard dose, efficacy was 90·0% (67·4-97·0; three [0·2%] of 1367 vs 30 [2·2%] of 1374; pinteraction=0·010). Overall vaccine efficacy across both groups was 70·4% (95·8% CI 54·8-80·6; 30 [0·5%] of 5807 vs 101 [1·7%] of 5829). From 21 days after the first dose, there were ten cases hospitalised for COVID-19, all in the control arm; two were classified as severe COVID-19, including one death. There were 74 341 person-months of safety follow-up (median 3·4 months, IQR 1·3-4·8): 175 severe adverse events occurred in 168 participants, 84 events in the ChAdOx1 nCoV-19 group and 91 in the control group. Three events were classified as possibly related to a vaccine: one in the ChAdOx1 nCoV-19 group, one in the control group, and one in a participant who remains masked to group allocation. INTERPRETATION: ChAdOx1 nCoV-19 has an acceptable safety profile and has been found to be efficacious against symptomatic COVID-19 in this interim analysis of ongoing clinical trials. FUNDING: UK Research and Innovation, National Institutes for Health Research (NIHR), Coalition for Epidemic Preparedness Innovations, Bill & Melinda Gates Foundation, Lemann Foundation, Rede D'Or, Brava and Telles Foundation, NIHR Oxford Biomedical Research Centre, Thames Valley and South Midland's NIHR Clinical Research Network, and AstraZeneca