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

Abstract

Research development in the adolescent health arena is increasingly called for, given the relative lack of robust data on the health of young people. However, specific issues need to be considered when researching this age group. Such issues include participation of young people in the research process, availability of adolescent-specific data, developmental considerations and the interface between paediatric and adult-orientated healthcare. The aim of this paper is to highlight the importance of participation of young people in research and to discuss the key areas for consideration for practitioners when conducting research involving young people.

Opportunistic adolescent health screening of surgical inpatients

“…The importance of participation in the design of clinical services and research studies is well recognised 8 9. This is an area that our organisation is now prioritising (eg, the involvement of a youth advisory committee in the design of Perth's New Children's Hospital).…”

The Unsteady Mainstay of the Family: Now Adult Children’s Retrospective View on Social Support in Relation to Their Parent’s Heart Transplantation

“…In future research, other interview methods may provide more knowledge about this population, especially if the interviews are made close in time with the parent's heart transplant. However, the interviewer must have good knowledge of children and adolescents and be aware of the difficulties of interviewing a young population [33]. …”

The Health Needs of Young Women

“…5,8-10 As dedicated care for this population is needed in multiple contexts, and as preventive healthcare becomes a greater priority globally, it is useful to consider the ways in which the evolving pursuit of nursing knowledge can inform the development of such care. 11,12 In both areas, the nature of knowledge and its applications are at stake—as nurses pursue development of the science that shapes our professional lives, adolescents and young adults often seek greater understanding of the events that shape their daily lives. 7 Much as nursing research has sought to make the voices of nurses evident in its literature, efforts to develop care strategies for young people must incorporate the voices of adolescents and young adults.…”

“…Adolescents' perceptions of personal health and beliefs about health more broadly are of particular relevance to health care providers, since they may influence risk-taking behaviors, relationships, and other important aspects of development. 7,12,20-23 Likewise, individual nurses' perceptions of nursing as a whole and of nursing care-provision are necessary parts of a developing professional science, since they influence when and how that science is applied. 3,24 For girls and young women, health beliefs and behaviors may be informed by the centrality of the desire for good relationships—romantic and otherwise—which is one way by which these populations self-locate socially, or sociolocate .…”