‘They wouldn’t know how it feels . . .’: characteristics of quality care from young people’s perspectives: a participatory research project

Abstract

Literature suggests there is a need to hear from children themselves about the quality of healthcare they receive and, although their views are increasingly sought, little is known about children’s definitions of ‘high or low quality care’. This article reports on a participatory, qualitative study that set out to explore with children and young people whether they could be involved in monitoring the quality of hospital care. Nine young people played an active role in the research process, collecting data from an additional 129 participants aged between 9 and 14. Five characteristics of quality care were identified: ‘technical expertise’, ‘friendly staff ’, ‘respect’, ‘choice’ and ‘explanations’.

“What we want”: chronically ill adolescents’ preferences and priorities for improving health care

“…For outpatient facilities, our findings correspond with those of other studies that also indicated the importance of good explanations and having a choice,33 as well as of more efficient services and reduced waiting times 27,47. A study by Wray and Maynard also demonstrated that both streamlined care processes in the outpatient department and care interactions are important to young people with congenital heart conditions who move to adult services 47.…”

“…Honesty, respect, a caring and friendly attitude, being focused on adolescents, and technical competence are all important 9,23,26,33,46. Trustworthiness seems a core attribute for professionals and is related to good communication skills and respect for teenagers’ opinions and privacy 20,25,31.…”

“…Some studies focused on themes related to privacy31 or adolescents’ decision-making preferences 32. The various studies applied either qualitative2,15,23–26,31,33 or quantitative9,10,12,30 methodologies. In the Netherlands, an estimated 14% of all children under 18 years have a chronic condition 34.…”

Quality nursing care in Australian paediatric hospitals: a Delphi approach to identifying indicators

“…Children and consumers’ views were not sought during this initial process of identifying quality indicators. Quality indicators would be enhanced if input was sought from children and families as consumers and community members (McKenzie & Hanley 2007, Moules 2009).…”

Pragmatics and Parenting

“…Where it may be difficult and ethically inappropriate to follow up data collection at certain times. Albeit other issues such as children's intensive care experiences and palliative and end of life care have been investigated and the challenges addressed (Bellali et al 2007, Moules 2009, Grinyer 2012. However, in addition there are perhaps challenges of the social judgements that research into parenting might evoke.…”