Table 3 Examples of challenges described by researchers with previous experience of involving users (n = 37), categorized into six types of challenges
Challenges | Descriptions |
|---|---|
Resource demands | Practical and resource demanding The project took longer time Organizational hindrance to get enough time and resources It took a lot of resources (time, people) that could have been used for other tasks Spent some time communicating with the people involved Sufficient funding to pay for transport and other related costs Resources spent on recruiting and training people, where some only did a few interviews. Still, this was not unexpected, and others did more Time consuming to consider and balance different opinions Time |
Recruitment and sustaining participation | There is a challenge concerning time as healthcare professionals and managers have difficulties to leave their assignments during working hours Difficult to recruit health professional due to their lack of time. Also, difficult to recruit older adults Lack of time of practitioners, decision-makers and policy-makers to be involved in research for sessions longer than 30 minutes (1 hour maximum) and for more than one session Many decline the invitation to participate Recruitment and sustaining participation over time was a challenge To get enough participants among the users |
Representativeness of those involved | Bias in power, do we involve the right users? Who will they represent? Issues of the level/degree of representativeness of the users involved Problems with representation, i.e. who could speak for whom. For example, regarding the voice of people with very complex needs who have difficulties in articulating their views They were not fully representative, so you had to take some notions under consideration before implementing |
Involving older adults | Language barriers Concerning the involvement of older citizens one of the challenges has been to ensure that we provide information that is easy to understand Fatigue and short-term memory loss among involved older citizens with advanced, long-standing chronic conditions which involves significant planning and suitably qualified research staff to optimize the enjoyment and desired level of involvement of the older users' having their own agenda for participating in the research Many frail with multiple diseases Another challenge was how to really involve them and encourage them to be involved in “setting the agenda”. It’s easy as a researcher to take too much of the lead Many negotiations Some participants expressed ageistic opinions |
Involving professionals | Concerning the involvement of healthcare professionals and managers one of the major challenges has been to ensure that research ethics is ensured There was a need for continuous negotiations between researchers and the professionals to reach consensus. From a researcher perspective it was necessary to make concessions regarding the scientific quality |
Other challenges | Lack of knowledge how to involve users Translate findings We were not sure if our findings could be reported without bias by the media |