3. Emergent themes and practice guidelines

3.4. Positive effects of (greater) participation

During the IP there were several discussions about the impediments or obstacles to participation. Where these obstacles can be overcome, then there were opportunities for change and interventions that promoted service user empowerment more purposefully and effectively:

  • In some countries participation and co-production are expected by research agencies and funders. These framework conditions need to be related to core principles of social work rather than being applied ‘mechanically’.
  • These approaches can lead to greater efficiency and longer-term impact of intended changes, whereby the criteria of efficiency are again to be defined within the participatory framework.
  • There can be a positive, ‘pedagogical’ effect where non-academic participants learn how to gain greater insight into the background of issues, develop skills, and manage teaching and learning environments autonomously.
  • Engagement with service users can provide greater academic ‘depth’ to research topics, such as identifying new aspects and dimensions of the original research question and how it can be answered.
  • Participatory approaches can enhance greater legal and ethical accountability and act as a defence against challenges of manipulation of data or self-interest in research projects.

Theme 4) Case Study Example: Participation - Impediment and /or opportunities (See Roets, Dean and Bouverne-De Bie 2022; Roets et al.2020)

In the Belgian case study, the language of disability rights has acquired symbolic potential in health and social care services and has been linked to wider concerns about disabled people’s citizenship and participation.

The case study indicated the complexity of bringing democratic participation in practice when working with Marie, a determined woman with intellectual disabilities. On the one hand, the professionals seem to be overfocussed on issues of individual choice and independence that permeates health and social care practice. Their professional judgments tended to censure her behaviour as that of an ‘irresponsible citizen’, unfit to cope with her relative autonomy and freedom. Their subtle and disciplinary, paternalistic and controlling professional orientation, tended to cast her as incompetent and incapable of making proper and reasonable choices, of managing her own care and support, and thus creates a dichotomy between ‘us’ and ‘them’. It was argued that professionals should be more willing to embrace the frailty of the vulnerable human subject and celebrate universal interdependency. In doing so, they can work towards recognition of Marie’s life knowledge as a leading figure in the self-advocacy movement and co-construct the nature of care and support as a democratic forum of dialogue. In that sense, health and social care professionals can create a public and democratic space in which Marie is enabled to participate in the interpretation of her concerns and aspirations.