Academic journal article Research and Theory for Nursing Practice

Why Do Adolescents with Type 1 Diabetes and Their Parents Participate in Focus Groups?

Academic journal article Research and Theory for Nursing Practice

Why Do Adolescents with Type 1 Diabetes and Their Parents Participate in Focus Groups?

Article excerpt

Almost all patient-centered research is dependent on voluntary participation by participants. Many forces, however, act to either encourage or inhibit people from deciding to participate. This study explored adolescents' with Type 1 diabetes and their parents' reasons for participating in a research study. We recruited adolescents with type 1 diabetes mellitus and their parents to participate in a focus group study. Qualitative analysis of the focus group data followed a set procedure: (a) audio review, (b) reading through transcriptions, (c) discussions among investigators regarding key elements of participants' perceptions, (d) determination of conceptual themes, and (e) assignment of relevant responses to appropriate thematic constructs. The 10 focus groups involved 59 participants. The three major themes that developed were giving and receiving, desire for peer socialization, and need for validation. Themes captured the reasons adolescents with type 1 diabetes and their parents decided to participate in this research. A better understanding of why people participate in research may help us to meet their needs and desires more completely. Designing research to meet these reasons will have the dual affect of increasing participation while also better serving those who choose to be studied.

Keywords: research; participating; recruitment; diabetes

Almost all patient-centered research depends on voluntary participation. Many forces act to either encourage or inhibit people from deciding to participate. Indeed, studies have documented that patients participate in research for varying reasons, including incentives, altruism, and idiosyncratic motives (Brown, Long, & Milliken, 2002; Kreiger, Ashbury, Cotterchio, & Macey, 2001). Other studies have documented reasons why patients refuse to participate in research. Mistrust, stereotypes, and procedural barriers have stood in the path of patient enrollment in past studies, especially when attempting to enroll patients in underrepresented minority, sex, or age groups (Johnson, Williams, Nagy, & Fouad, 2003).

Disease state also influences patients' decisions to participate in research (Kreiger et al., 2001; Wright et al., 2004). Clearly, the way in which a disease impacts a patient or family can affect decisions to participate in research. In addition, the adolescent developmental state, as well as how willing they are to share information about themselves and their health, can also affect their participation in research (Broome, 1999). The way in which adolescents perceive themselves and their health has been shown to be distinct from both adults and children (Feldman & Elliott, 1990). Unfortunately, this age-group is among the least studied, and subsequently there is little information available on how to recruit them for studies (NINR Priority Expert Panel on Health Promotion et al., 1993). Many have suggested that research designed for adolescents should take into account the differences and needs of this population instead of merely assuming an adult perspective (Millstein, Nightingale, Petersen, Mortimer, & Hamburg, 1993). Previous work has described how adolescents can be encouraged to stay in studies through thoughtful design, but these issues do not necessarily address the best means of recruiting, especially in a smaller population of adolescents with a chronic disease (Crowe & Billingsley, 1990).

We recently conducted a set of focus groups of adolescents with type 1 diabetes and their parents about psychosocial issues concerning living with the disease and how it influences their relationships. Adolescents are notoriously difficult to recruit for such studies, so we planned a three-stage approach in order to recruit a sufficient number of patients and their parents. The first stage was to send a letter informing them of our wish to conduct groups "to talk about their life and diabetes." We were quite surprised by the response; we quickly filled our groups to capacity, and did not need to evoke the second stage in our recruitment strategy. …

Search by... Author
Show... All Results Primary Sources Peer-reviewed

Oops!

An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while.