A response to Bates, C et al (2020) “Always trying to walk a bit of a tightrope”: The role of social care staff in supporting adults with intellectual and developmental disabilities to develop and maintain loving relationships. <i>British Journal of Learning Disabilities</i>

Lewis, Beth A.; Richards, Simon; Rice, Simon; Collis, Anne

doi:10.1111/bld.12352

Cited by 8 publications

(6 citation statements)

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“…Addressing these complexities requires dialogue with potential end users early in the process of intervention design [ 32 , 33 ]. In addition, there is an ethical imperative for stakeholder involvement in the conduct of health care research [ 34 , 35 ]. The inclusion of “societal actors” in the research process has been enshrined internationally in the UNESCO Recommendation on Open Science [ 4 ] and the national Statement for Community and Consumer Involvement in Health Care Research in Australia [ 36 ].…”

Section: Introductionmentioning

confidence: 99%

Coproducing Knowledge of the Implementation of Complex Digital Health Interventions for Adults with Acquired Brain Injury and their Communication Partners: Protocol for a Mixed Methods Study

Miao¹,

Power²,

Rietdijk³

et al. 2022

JMIR Res Protoc

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Background The Social Brain Toolkit, conceived and developed in partnership with stakeholders, is a novel suite of web-based communication interventions for people with brain injury and their communication partners. To support effective implementation, the developers of the Social Brain Toolkit have collaborated with people with brain injury, communication partners, clinicians, and individuals with digital health implementation experience to coproduce new implementation knowledge. In recognition of the equal value of experiential and academic knowledge, both types of knowledge are included in this study protocol, with input from stakeholder coauthors. Objective This study aims to collaborate with stakeholders to prioritize theoretically based implementation targets for the Social Brain Toolkit, understand the nature of these priorities, and develop targeted implementation strategies to address these priorities, in order to support the Social Brain Toolkit’s implementation. Methods Theoretically underpinned by the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework of digital health implementation, a maximum variation sample (N=35) of stakeholders coproduced knowledge of the implementation of the Social Brain Toolkit. People with brain injury (n=10), communication partners (n=11), and clinicians (n=5) participated in an initial web-based prioritization survey based on the NASSS framework. Survey completion was facilitated by plain English explanations and accessible captioned videos developed through 3 rounds of piloting. A speech-language pathologist also assisted stakeholders with brain injury to participate in the survey via video teleconference. Participants subsequently elaborated on their identified priorities via 7 web-based focus groups, in which researchers and stakeholders exchanged stakeholder perspectives and research evidence from a concurrent systematic review. Stakeholders were supported to engage in focus groups through the use of visual supports and plain English explanations. Additionally, individuals with experience in digital health implementation (n=9) responded to the prioritization survey questions via individual interview. The results will be deductively analyzed in relation to the NASSS framework in a coauthorship process with people with brain injury, communication partners, and clinicians. Results Ethical approval was received from the University of Technology Sydney Health and Medical Research Ethics Committee (ETH20-5466) on December 15, 2020. Data were collected from April 13 to November 18, 2021. Data analysis is currently underway, with results expected for publication in mid-2022. Conclusions In this study, researchers supported individuals with living experience of acquired brain injury, of communicating with or clinically supporting someone post injury, and of digital health implementation, to directly access and leverage the latest implementation research evidence and theory. With this support, stakeholders were able to prioritize implementation research targets, develop targeted implementation solutions, and coauthor and publish new implementation findings. The results will be used to optimize the implementation of 3 real-world, evidence-based interventions and thus improve the outcomes of people with brain injury and their communication partners. International Registered Report Identifier (IRRID) DERR1-10.2196/35080

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Section: Introductionmentioning

confidence: 99%

Coproducing Knowledge of the Implementation of Complex Digital Health Interventions for Adults with Acquired Brain Injury and their Communication Partners: Protocol for a Mixed Methods Study

Miao¹,

Power²,

Rietdijk³

et al. 2022

JMIR Res Protoc

View full text Add to dashboard Cite

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“…Research that seeks to affect the life of a particular group is recommended to involve the participants on the academic side of the research process (Lewis et al, 2020). While this was not the case in our study, the second author presented the findings to the participants individually to clarify, correct and validate the findings of our analysis.…”

Section: Methodsmentioning

confidence: 99%

Transitions from school to sheltered employment in Norway – Experiences of people with intellectual disabilities

Wass

Safari

Haugland

et al. 2021

Brit J Learn Disabil

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Accessible summary ●We interviewed people with intellectual disabilities about their experiences of finding a job. ●Some of the people we interviewed made decisions about their future job, while others were not part of meetings, planning and decision‐making. ●Parents and teachers were important in the planning process. ●The people we interviewed advise students to be bold and take chances when searching for a job. ●It is important that people with intellectual disabilities are in charge when they go from school to work. Abstract Background Nordic welfare models are characterised by emphasising both social security and labour market participation. Nevertheless, most people with intellectual disability either receive a disability pension or work in sheltered workshops. While transitions into integrated employment have been studied, transitions from school to sheltered employment have received less attention. We therefore explore the views of people with intellectual disabilities, transitioning from school to a sheltered employment programme. Methods We interviewed nine adults with intellectual disabilities that had made the transition into a service centre that provides both competitive employment with support, and employment in sheltered workshops. The interviews were analysed thematically. Findings The thematic analysis revealed two main themes: involvement during the transition and adapting to a new role. Most participants described transitions where they had been involved, in varying degrees, in identifying their work preferences, participated in transition activities and made personal choices. Some participants, however, shared experiences where they had not participated in activities, where personal choices were restricted to predefined options, or decisions were made by someone else. The participants further shared experiences of navigating into new contexts, characterised by new situations and new interactions. To navigate successfully in such environment, the support network was important. The participants advised future “transitioners” to be brave and utilise opportunities to find suitable employment even in challenging situations. Conclusions Our study emphasises the importance of tailoring the transition to individual preferences and perspectives rather than aiming for a uniform, one size fits all type of transition. It is important to build on the positive aspects of sheltered employment as well as to further develop innovative ways of transitioning into integrated employment.

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“…It was important that PWLD were involved in the design of the study, helping to shape it and ensure an inclusive and meaningful approach was taken (Garcia Iriarte et al, 2014;Northway, 2000). PWLD have been excluded from research due to communication difficulties and/or the perceived "severity" of learning disability (Goodley, 1996;Atkinson, 1997;Lewis et al, 2020). Members of their support network are therefore often asked to comment on their behalf.…”

Section: Designmentioning

confidence: 99%

What are the experiences of people with learning disabilities, and their support workers, when negotiating access to opportunities for developing relationships and intimacy?

Race

2023

bpsfpid

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IntroductionPeople with learning disabilities (PWLD) are often described as ‘vulnerable’ and needing protection. This contributes to a lack of involvement in decision making. Despite recent positive shifts in societal attitudes surrounding sex and PWLD, gaps between attitudes and practice remain (Shakespeare & Richardson, 2018). There is confusion about how to effectively support and empower PWLD to engage in intimate relationships whilst minimising potential harm. This study aimed to explore the experiences of PWLD and their support workers, when negotiating access to relationships and intimacy. The voices of PWLD were at the centre of this research.MethodA qualitative methodology was used to explore the topic. Three PWLD and three support workers participated. It consisted of two parts: part one was data creation using prompt cards to facilitate discussion between PWLD and support workers and part two was a semi structured interview with individual participants using an Interpersonal Process Recall (IPR) framework. Data was analysed using a multi perspective Interpretative Phenomenological Analysis (IPA) approach.ResultsPersonal experiential themes (PETs) and subthemes represented the experiences of each participant and were then analysed in the context of their pair (PWLD and support workers). Group experiential themes (GETs) were developed for the group as a whole, paying particular attention to any similarities or differences between PWLD and support workers. Four overarching GETs were: intersecting layers of vulnerability, navigating without a compass, the struggle for control and fearing negative consequences.DiscussionThis study provided each participant with a rare opportunity to safely discuss relationships and intimacy in a scaffolded space. The outcomes highlight a need for further education and guidance for both PWLD and support workers as the current lack of this contributed to parallel experiences of perceived vulnerability. This often led to avoidance and restriction of PWLD’s right to engage in relationships and intimacy.

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A response to Bates, C et al (2020) “Always trying to walk a bit of a tightrope”: The role of social care staff in supporting adults with intellectual and developmental disabilities to develop and maintain loving relationships. British Journal of Learning Disabilities

Cited by 8 publications

References 0 publications

Coproducing Knowledge of the Implementation of Complex Digital Health Interventions for Adults with Acquired Brain Injury and their Communication Partners: Protocol for a Mixed Methods Study

Coproducing Knowledge of the Implementation of Complex Digital Health Interventions for Adults with Acquired Brain Injury and their Communication Partners: Protocol for a Mixed Methods Study

Transitions from school to sheltered employment in Norway – Experiences of people with intellectual disabilities

What are the experiences of people with learning disabilities, and their support workers, when negotiating access to opportunities for developing relationships and intimacy?

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