Exciting but exhausting: experiences with participatory research with chronically ill adolescents

Abstract

Background Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research.

Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: The added value of mixed methods research

“…dent variables should be included in the regression analyses. Then, while some results from sub-studies have been published separately [37,42,44], the drafting of this manuscript stimulated further integration by exploring and explaining adolescents' participation during consultations. For this, interpretations from the qualitative studies were compared with the quantitative dataset and discussed in the research group.…”

“…Respondent validation was also employed: participants of the focus group sessions were invited to reflect upon the interpretations of the hospital observations. Interview findings were discussed with young patients who acted as co-researchers in a participative study conducted in 2006 [44].…”

Participatory peer research methodology: An effective method for obtaining young people’s perspectives on transitions from care to adulthood?

“…This can be frustrating for the participant who may feel that the peer researcher is not interested in, or listening to what they have to say, but it also has an impact on the quality of the data obtained. Review of the transcripts also revealed that peer researchers sometimes failed to probe to find out more about a topic or to clarify issues (see also Kilpatrick et al, 2007;Van Staa et al, 2010). This could limit the data obtained on issues that were central to the research.…”

‘Nothing about us without us’: considerations for research involving young people

“…To ensure these questions are also representative of the views of the population in question, it is important to ensure that those involved come from a range of backgrounds 4. This includes young people with cognitive and/or communication impairments 4 5…”

“…Some researchers have reported some of these challenges4 7 including workload, recruitment, ethics, aspects of power and impact on research quality. Holland et al 7 caution practitioners “against the assumption that participatory research per se necessarily produces ‘better’ research data, equalises power relations or enhances ethical integrity.” Research is also needed to explore how young people themselves perceive their potential roles as active research partners particularly in the context of chronic illness and limited energy levels.…”