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Table 3 Summary of study findings and lessons learned from this participatory research

From: Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study

  Co-researcher level Researcher level Process level
Facilitators - Individual preparation: reading the instructions, practising asking probing questions, repeating the introduction, reflecting on past interviews.
- Being motivated for one or more of the following reasons: being committed to quality improvement, being valuable to other service users, being part of a social group, creating a new social identity, or personal development and acquiring new skills, wanting to spend time.
- Becoming experienced: doing research activities more often makes it easier.
- Supportive attitude: support when necessary, increasing self-confidence of co-researchers, backup.
- Coordination and communication: inform co-researchers on time about the day and time an interview is planned, know what to expect, preparation of team meetings by researcher.
- Motivated for participatory research.
- Discussing reasons for engagement and sharing wishes for collaboration: this created a shared understanding of what each team member wanted to accomplish in the research.
- Formulation of ground rules: i.e. privacy issues, team cooperation and the possibility of cancelling attendance.
- Training: learning to ask probing questions, learning to listen openly, practise in a realistic setting, written information in a small booklet.
- Preparation right before the interview: Preparing the interview together: what are we going to do? Practising the introduction to an interview.
- Debriefing right after the interview: complimenting each other, giving suggestions, and sharing what went well, what could have gone better. Discussing the report notes of a co-researcher.
- Collaboration in team: being part of a team, joint meetings, good atmosphere, development of a bond, transparency and providing feedback, support of the team, sociability, good communication.
Barriers - Limited energy: interviews sometimes took a lot of energy, and a lot of stuff to think about. Schedule extra rest moments and plan one interview for one day.
- Being a perfectionist: set too high goals for yourself, becoming too nervous.
- Writing a report afterwards: not motivated enough to write a report of the interview directly afterwards.
- Poor health and bad hearing: (specifically in the OA team) bad hearing or poor physical health.
- Permanent availability for questions and travel support when needed, sometimes it was not possible to answer the telephone during another interview.
- Coordination and collaboration takes substantial time
- Ambient soundings and stimuli during an interview, for example when a respondent chose an interview setting outdoors.
- Clarity on preferences versus flexibility needed: interviews took place at various times which needed a lot of flexibility from co-researchers, whereas they preferred clarity beforehand, as early as possible. Some co-researchers preferred more structure..
Requirements for participation - Knowing service users of the care residence: this makes inviting respondents easier.
- Motivation and skills: Co-researchers need to be motivated for collaboration and quality improvement, have people knowledge, be social,good communication and listening skills, be enthusiastic, be interested in others, be healthy, able to hear, open to others.
- Courage: Be brave, willing to overcome limitations.
- Relax: try to stay calm and “remember to keep breathing in and out”.
- Motivation and skills for equal collaboration: willing to work with co-researchers, able to listen well, let the co-researcher have their say without interrupting, accepting opposite opinions of co-researchers, good in deliberation and open attitude in discussing themes. - Proper training: practising together, getting to know the subject and each other.
- Coordination: one person needs to be responsible for planning the interviews, for logistics, and for keeping an overview on the activities.
- Financial appreciation for the time invested by co-researchers and a travel allowance. Pay attention to national restrictions for co-researchers receiving a pension or welfare benefit.
- Support in the care organisation at the management level for the quality improvement initiative. Help in recruiting respondents and informing care professionals.
- Good collaboration: team members fit in the team