Potential Barriers and Challenges
The panel of world-leading experts that contributed to the content of this Toolkit thought that these are some of the most important potential barriers or challenges relating to the unique nature of the participants, those upon whom they rely for their participation (families and staff - 'co-participants'), and the agencies within which the research will take place.
systems & agency factors
Services can be multi-layered and each layer can either be a facilitator or a barrier to recruitment, retention and data collection.
Engaging with services can be difficult without an ‘advocate’ within each service.
Staff changes and staff turnover are common in ID services and pose a challenge to ID trials.
As new staff are recruited they will have to be trained regarding the trial protocol and any interventions.
Staff burden, apathy or stress, can have a major impact on recruitment, retention and data collection.
Multi-site, multi-agency or multi-country trials may require multiple applications to ethics/governance committees, each with their own nuanced requirements.
A trial may have to link with numerous health and care service providers who each have a responsibility for a given participant.
Often these service providers are scattered, are inconsistent in their approach to research and are not adequately funded to allow staff to participate in research activities.
There may be participants from both treatment and control arms of a study living in the same home or attending the same service, and this can lead to cross-contamination.
Participant’s can move to new residential settings and clinical care staff may not inform research staff.