British Journal of Learning Disabilities最新文献

Background

Inclusive research has sidelined discussion of theoretical issues with researchers with intellectual/learning disabilities. This is a situation which the Big Ideas initiative sought to change. Between 2021 and 2023, the Open University, Leipzig University and the University of Koblenz organised nine workshops to explore influential theories in disability research. The objective was to share a theory (Big Idea) that sheds light on disability with self-advocates and discuss how it relates to their experience. By making theories accessible and discussing how they relate to lived experience, we aimed to inform self-advocates and activist researchers about key concepts in disability, deepen their capacity for research and campaigning, and better equip them to activate for change.

Methods

The online workshops were evaluated by observers. These observations were used by an inclusive group of activist researchers as the basis for an overall evaluation of the project.

Findings

People with learning disabilities can engage with complex theories if these are presented accessibly alongside opportunities for reflective discussion. Input from self-advocates helps to broaden and deepen theoretical understanding.

An unanticipated but important finding was that the Big Ideas workshops created a new space in which academics and self-advocates could learn together as equals.

Conclusions

Making theory accessible and easier to understand is both possible and valuable.

Background

I'm Me is a creative research project co-created between York St John University and Mind the Gap, investigating learning disabled and autistic artists’ understandings of identity, representation and voice.

Methods

In this paper, we use Walmsley and Johnson's criteria for inclusive research to reflect on the involvement of people with learning disabilities and autism in I'm Me.

Findings

Researchers need to carefully reflect on who benefits from research. Long-term relationships allow genuine allyship and for research design to emerge in an inclusive manner. Taking the time to develop access and clear structures for decision-making can support people with learning disabilities’ participation and control over research. Part of access is sharing our findings in accessible ways, in this case, by using plain language and artistic outputs.

Conclusions

Working out how people with learning disabilities and autism should be involved in research has involved establishing structures, reflecting and responding to create as much involvement and enable as much decision-making as possible.

Background

Inclusive research is widely accepted as an essential part of the process to democratise knowledge creation and dissemination. However, while peer review is an important part of academic publishing, the potential to include people with learning disabilities in this element of the research process has not previously been explored using a deliberative approach.

Methods

Accessibility adaptations were made to the citizens' jury approach enabling people with learning disabilities to participate. Sixteen adults with mild to moderate learning disabilities were recruited to participate in the adapted citizens' jury. Jury members took part in capacity-building workshops to develop their knowledge of research and research processes. Six expert witnesses presented evidence to the citizens' jury and were questioned on aspects of inclusive research, representation, peer review and academic publishing processes. Facilitators supported citizens' jury members to reflect on the evidence presented and to develop recommendations for inclusive peer review.

Findings

The citizens' jury was an effective inclusive research approach in this case. Jurors made recommendations related to the question of inclusive peer review: inclusive reviews should be done by groups rather than individuals; the research under review must be in accessible formats and on relevant topics; reviewers need sufficient time to conduct reviews; and diverse groups of people with learning disabilities should be involved.

Conclusions

People with learning disabilities appreciate the importance of peer review but do not necessarily want to participate in it. This jury suggested creative approaches to disseminating, reviewing and engaging with research, including building more opportunities for dialogue between researchers and self-advocates. The adapted citizens' jury was a novel and effective method of supporting deliberation on this topic but other approaches to including the views and experiences of those with more severe learning disabilities should be explored.

Background

Coproduction is a fast-developing approach to patient involvement. It entails health and social care services users working as equals in partnership with providers and other public institutions to produce novel research and information, usually aimed at the improvement of service planning and delivery.

Methods

This paper presents two real-life examples of attempted coproduction with a group of men with learning disabilities in England. The first case study concerns the piloting and assessment of a ‘user-friendly’ version of a local authority's ‘vision statement’. The second explores an attempt to secure funding to develop and evaluate a community intervention with and for people with learning disabilities.

Findings

Together, these portraits capture two important and intertwined problems that afflict the field of coproduction: namely, the drive to create fast results and the challenges of time and resource allocation that service users and professionals face whenever they attempt to coproduce work in a meaningful way.

Conclusions

The paper concludes with some suggestions for how policy and practice might seek to address these issues in the future.

Background

People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports.

Methods

A case study was conducted on a large Western Australian disability provider of group homes to 160 people with intellectual disability. Over an 18-month period, including during the COVID-19 pandemic, the study quantified health service use in hospital- and community-based settings, ways by which the person was supported to access health care and the impact on other people supported by the provider. Economic costs of supporting access to health services were estimated.

Findings

Overall, the disability provider supported 160 people in accessing health services an average of 23 times each (n = 3617, median = 20, interquartile range = 10–33) over the 18 months. Support included staff attending with the person (96%), following up with guardian/decision-maker (50%), additional resourcing via overtime or staff backfills (6%) and transport (94%). The average cost of supporting one health visit was estimated at $78.51 AUD (2021). Impact on the person's household included loss of opportunity for housemates (30%), reduced supervision within the home (79%) and longer timeframes to complete care needs (32%). The impact of COVID-19 restrictions saw a reduction in allied and mental health service use that did not return to prepandemic levels following the cessation of restrictions. Primary care, specialist, outpatient, pathology and emergency service use was also lower in the postrestriction period compared to the prepandemic period.

Conclusions

For people living in group homes, the disability provider plays an essential role in supporting health service access, primarily through the provision of support staff and transport. The change in health service utilisation following the COVID-19 restriction period indicates that altered health system priorities can potentially exacerbate access inequality for people with intellectual disability.

Background

Mothers with learning disabilities are at higher risk of child removal and mental health difficulties and may face more barriers to developing attachment relationships with their children. Mothers with learning disabilities' voices are still underrepresented in research, with less known about those who are actively parenting their children. This study aimed to explore mothers' perceptions of developing emotional relationships with their children.

Methods

Mothers with learning disabilities who were actively parenting were recruited via advocacy groups across the United Kingdom. Semi-structured interviews with 10 mothers who self-identified as having learning disabilities were analysed using thematic analysis.

Findings

Three key themes were generated: (1) Understanding and Facilitating Attachment Relationships, (2) Barriers to the Attachment Relationship and (3) Bidirectional Nature of Relationships: Child Needs Mother, Mother Needs Child. Overarching experiences of powerlessness, autonomy and resilience were prominent across mothers' experiences.

Conclusions

Mothers acknowledged the importance of close emotional relationships with their children. Subthemes highlighted that mothers recognised the importance of behaviours that mirrored attachment theory, including reciprocity and proximity seeking. Mother–child relationships faced varying challenges including separation and conflict between the mother's and the child's needs. Findings indicate the need to support mothers through a trauma-informed attachment perspective, especially in the context of maternal mental health needs and where children may also have additional needs.