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Table 2 Description of the three research teams

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

 

Characteristic

Older adults team - OA

Mental health team - MH

Intellectual disability team - ID

Co-researchers

Male / Female

2 / 3

3 / 2

4 / 2

Living situation

In- / outpatient care setting

Situated in rural area

5 / 0

Living in Amsterdam (capital of the Netherlands)

0 / 5

Situated in and around a city in the province of Noord-Brabant

3 / 3

In care for

5 physically frail elderly

2 people for addictions, 1 people for personality disorders, and 2 people with autism

5 people with mild intellectual disability, 1 person suffering from a non-congenital brain injury

Age (years)

73–93

32–67

24–67

Researchers

Male / Female

1 / 1

1 / 1

0 / 2

Age (years)

27 and 67

27 and 67

27 and 41

Five co-researchers and two researchers took part in the older adult research team (OA team). Co-researchers all lived in the same residential care facility in a small village. One co-researcher was a critical thinker and offered many ideas, while others were more accommodating and looked for a feeling of togetherness. The atmosphere was friendly, relaxed and low-paced. All co-researchers received some kind of support such as support with dressing and showering, cleaning, meals or medication provision. They were all able to move independently within the building. Co-researchers talked a lot about their experiences with the care provided and their lives before they entered the residential care facility.

The mental health team (MH team) comprised five co-researchers and two researchers. The atmosphere in the MH team was generally very energetic. Co-researchers were very willing to contribute and think along; they had a lot of ideas and criticisms. The co-researchers could reflect very well on the research process and expressed themselves clearly. Three of the co-researchers received outpatient support, the other two co-researchers were in a stage of their recovery process in which they no longer received care. Three co-researchers used their experiences to assist service users with mental health issues in a paid position. Co-researchers had experience with a variety of psychological issues, among others autism, addiction, and personality disorders.

The intellectual disability team (ID team) consisted of six co-researchers and two researchers. The atmosphere in this research team was generally very cheerful. The co-researchers were eager to learn and often asked questions. Some of the co-researchers reflected on the research process actively, whereas others preferred to listen to the ideas of other co-researchers. Most of the co-researchers were open in their communication, including about what they did not like when they provide feedback. Three of the co-researchers lived in a care facility themselves and three received outpatient support at home. Five of the co-researchers were born with their intellectual disability, and one co-researcher suffered from a non-congenital brain injury.

In total, three researchers were involved. A young female PhD student (AS) with an educational background in interdisciplinary social sciences was part of all three research teams throughout the project. One researcher is almost retired and works for a Dutch client council organisation with a nationwide scope. He was first part of the ID team only and later on part of the MH and OA team. The third researcher (NB) is a female senior researcher of 41 years old having an educational background in public health and movement sciences. She was first part of the OA team and later on part of the ID team. The researchers were eager to perform the participatory research and put into practice their theoretical knowledge based on the literature. During the facilitation of the team meetings, researchers took on slightly different roles based on the features of co-researchers of each team. In the MH team, researchers ensured that all co-researchers could have equal contributions, and facilitated the process of seeking consensus in the team. In the OA team, researchers tried to stimulate co-researchers to think in a critical manner. In the ID team, researchers tried to hold on to a clear structure in the meetings to calm down the atmosphere.