Tuesday, 1 October 2013

Paper: What can carers contribute to service design?

My paper is finally out - I submitted it last year in June and it was published as early view this July. I carried out a study with three groups of stakeholders and assessed to which degree they agree on priorities for service design.

Of course I am biased, but I think this is really important and interesting research as it is the first time that we can quantify the contribution of different stakeholder groups which historically had different amount of influence on the service design process. For example, experts and policy makers usually have a lot of influence, carers (and patients, but unfortunatly I was not able to include them) usually have much less. One of the reason why they have so much less influence is because those with the power over the process doubt how useful their contribution can be (I guess you can call this a certain degree of professional arrogance) and this is exactly where my work chimes in. I can actually show that they can contribute new idea which established stakeholders recognize as valuable.

The article is available as open access:

Exploring the boundary of a specialist service for adults with intellectual disabilities using a Delphi study: a quantification of stakeholder participation

Eva-Maria Hempe, Cecily Morrison, Anthony Holland


There are arguments that a specialist service for adults with intellectual disabilities is needed to address the health inequalities that this group experiences. The boundary of such a specialist service however is unclear, and definition is difficult, given the varying experiences of the multiple stakeholder groups.
The study reported here quantitatively investigates divergence in stakeholders’ views of what constitutes a good specialist service for people with intellectual disabilities. It is the first step of a larger project that aims to investigate the purpose, function and design of such a specialist service. The results are intended to support policy and service development.
Study design
A Delphi study was carried out to elicit the requirements of this new specialist service from stakeholder groups. It consisted of three panels (carers, frontline health professionals, researchers and policymakers) and had three rounds. The quantification of stakeholder participation covers the number of unique ideas per panel, the value of these ideas as determined by the other panels and the level of agreement within and between panels.
There is some overlap of ideas about of what should constitute this specialist service, but both carers and frontline health professionals contributed unique ideas. Many of these were valued by the researchers and policymakers. Interestingly, carers generated more ideas regarding how to deliver services than what services to deliver. Regarding whether ideas are considered appropriate, the variation both within and between groups is small. On the other hand, the feasibility of solutions is much more contested, with large variations among carers.
This study provides a quantified representation of the diversity of ideas among stakeholder groups regarding where the boundary of a specialist service for adults with learning disabilities should sit. The results can be used as a starting point for the design process. The study also offers one way to measure the impact of participation for those interested in participation as a mechanism for service improvement.

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