Care is needed to ensure involving people as equals on research is not counterproductive, and a humanistic approach to support raises unease about going outside comfort zones.
Making coproduction work
Dobel‐Ober D, Moloney P, Millichap S. Hard to reach, or struggling to be heard? Real‐life experience of coproduction with people with learning disabilities. British Journal of Learning Disability. 21 April 2024.
Coproduction brings service users and providers together to consider planning and delivering services for learning disabled people.
The benefits of coproduction include social inclusion and a boost to employability and wellbeing. It is also a positive model to use in research studies.
This study notes that while coproduction is applauded by the disabled community, there has been some criticism of the time and cost required as well as over its effectiveness.
This paper presents two examples of coproduction in the UK.
The first describes the experience of a group of learning disabled men who worked with a consultant to support the creation of a user‐friendly version of a local authority’s vision statement.
The second example is about an attempt to secure funding to develop and evaluate a community project for learning disabled people.
Both examples reflect two intertwined problems in coproduction, which are “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”.
In the two case studies, the time required as well as the need for accessible documents added to the challenges of leading a study while working with learning disabled adults.
The conclusion is that when research is completed in haste, it can be counterproductive and leave disabled participants feeling disempowered. This in turn damages their confidence and trust in the process.
The study sets out suggestions to support coproduction, such as planning so participants feel safe enough to use their voice and ensuring resources are accessible.
In particular, coproduction must be thought about as valuable for the research study and not tokenistic.
Humanistic potential
Neuman R. Humanization: The humanistic perspective as a guide for supporting people with intellectual disability. British Journal of Learning Disability. 13 November 2023.
Shifting from a medical to a humanistic view of learning disabled people offers a life that feels meaningful, with independence and feelings of being valued equally.
This qualitative research study was conducted in a residential community which applied humanistic values to working with learning disabled adults and focused on housing, health, employment and leisure.
Semi-structured, in-depth interviews with 30 people in various roles involving providing support were carried out.
At times, the need to push the individual out of their comfort zone left them unsure.
The findings indicated a conflict. While support providers demonstrated they understood and desired to work using humanistic values, at times, the need to push the individual out of their comfort zone left them unsure.
To help support providers in resolving this dilemma, the author suggests a “humanization” model, with four theoretical principles:
- A meaningful life: enable and encourage the person to face new experiences and practise decision-making
- Autonomy: individuals can and are entitled to make their own decisions and should be encouraged to develop and express their priorities
- Holistic perspective: people are more than their abilities and difficulties
- Interaction based on dialogue: this should first and foremost acknowledge people’s abilities to understand, choose and face challenges.
The author suggests that the next stage in this area is developing tools that extend beyond the theoretical principles.
