| Literature DB >> 32518688 |
Aukelien Scheffelaar1,2, Nanne Bos1, Marjan de Jong3, Mattanja Triemstra1, Sandra van Dulmen2,4, Katrien Luijkx5.
Abstract
BACKGROUND: Although participatory research is known to have advantages, it is unclear how participatory research can best be performed. This study aims to report on lessons learned in collaboration with service users involved as co-researchers in three participatory teams in long-term care.Entities:
Keywords: Case study; Co-researchers; Elderly care; Intellectual disability care; Long-term care; Mental health care; Participatory research
Year: 2020 PMID: 32518688 PMCID: PMC7268743 DOI: 10.1186/s40900-020-00187-5
Source DB: PubMed Journal: Res Involv Engagem ISSN: 2056-7529
Inclusion criteria for co-researchers
| - 18 or older (no upper limit) | |
| - Experience as a client of long-term elderly care (residential or home care), mental health care, or care for intellectual disabilities | |
| - Receiving care for at least three months | |
| - Able to communicate verbally in Dutch | |
| - Able to generalise from their own experiences | |
| - Able to hold a conversation | |
| - Able to read and write at a basic level | |
| - A fairly stable health situation | |
| - Able to travel short distances |
Fig. 1Phases of research process and data collection
Description of the three research teams
| Characteristic | Older adults team - OA | Mental health team - MH | Intellectual disability team - ID | |
|---|---|---|---|---|
| 2 / 3 | 3 / 2 | 4 / 2 | ||
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 | ||
| 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 | ||
| 73–93 | 32–67 | 24–67 | ||
| 1 / 1 | 1 / 1 | 0 / 2 | ||
| 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. | ||||
Summary of study findings and lessons learned from this participatory research
| Co-researcher level | Researcher level | Process level | |
|---|---|---|---|
- - - | - - - | - - - - - - | |
- - - - | - - | - - | |
- - - - | - | - - - - - |
Contents of each training session
| Training session | Content of the session |
|---|---|
| 1 (introductory meeting) | Team members introduce themselves by using association cards |
| Discussing the content, aims and need for the research (i.e. added value of client participation and evaluating the quality of a care relationship) | |
| Sharing motivations for becoming involved | |
| Formulating ground rules for cooperation | |
| Exchanging personal information for getting in contact and paying remunerations | |
| 2 | Discussing research activities and role preferences Drawing up the invitation letter for respondents |
| Modifying the content of the qualitative instruments: open or semi-structured questions | |
| 3 | Training in individual interviewing techniques |
| - asking open questions and multiple choice questions | |
| - techniques for encouraging a respondent to tell more | |
| - summarising | |
| Learning to present the research to respondents | |
| Completing an interview | |
| 4 | Training in group interview techniques (optional) |
| - asking open questions and multiple choice questions | |
| - learning to deal with group dynamics | |
| Practising observing nonverbal information such as emotions | |
| 5 | Specific training sessions in applying one qualitative instrument, concerning individual interview and/or group interview techniques. |