Earning trust and losing it: Adolescents’ views on trusting physicians

Adolescents aged 11 to 19 years with cystic fibrosis, sickle-cell disease, juvenile rheumatoid arthritis, or inflammatory bowel disease diagnosed at least 2 years previously were recruited from hospital-based clinics. We attempted to contact all patients aged 11 to 19 years in these sub-specialty clinics for their participation. Introductory letters were sent, followed by phone calls, to these adolescents and their guardians to explain the study and to invite participation in a focus group. For comparison, a convenience sample of adolescents aged 11 to 19 years without chronic conditions were recruited from local summer recreation programs, a church, and a school using flyers and personal contacts.

Written informed consent was obtained from participants who were age 18 years and older and from the legal guardians of participants who were younger than age 18 years. Participants were reimbursed 10 dollars for their time and travel expenses. The study sample consisted of 54 participants divided by age (11 to 14 years and 15 to 19 years), gender, and the presence or absence of chronic disease into 12 focus groups ranging in size from 2 to 10 individuals (mean=5) (TABLE).

Following focus group protocol recommendations for homogenous groups¹² and other similar studies,^7,8 groups were divided by age due to differing developmental levels (early vs later adolescence) and gender, since same-sex groups are preferred for young adolescents. Participants were divided based on the presence or absence of chronic disease due to different health care experiences. For the groups of participants with a chronic disease, 17 were 11 to 14 years old (6 male; 11 female) and 12 were 15 to 19 years old (7 male; 5 female). For the groups of healthy participants, 13 were 11 to 14 years old (8 male; 5 female) and 12 were 15 to 19 years old (4 male; 8 female).

TABLE
Demographics of sample (N=54)

Data collection

Focus groups were conducted as part of the larger research project to explore adolescents’ preferences on various aspects of their health care (eg, doctor-patient relationship, doctors’ characteristics, physical environment, doctor-patient communication).¹¹ The current analysis examined one aspect of the doctor-patient relationship identified by participants: trust.

One professional facilitator led the 12 groups through 2-hour discussions about health concerns, preferred physician characteristics, and preferred visit characteristics. New topics raised by a given group were highlighted by the facilitator for discussion by subsequent groups, and discussions were directed away from topics that had reached saturation in previous groups.¹³

In general, adolescents discussed the dimensions of trust in response to 2 questions: “What makes a good doctor?” and “How do you know you can trust your doctor?” Audiotapes of all discussions were transcribed verbatim, edited for accuracy, and supplemented by field notes taken by co-investigators who attended the group discussions as observers. The presence of the co-investigators enhanced understanding of the transcripts, without apparent discomfort or inhibition of the participants.

Data analysis

The analyses occurred in multiple stages. During the first phase of analyses, 4 coinvestigators independently prepared summaries of each group transcript and initial lists of the themes discussed by the participants, using Crabtree and Miller’s editing-organizing style.¹⁴ They then met as a team to discuss their observations and to begin preliminary interpretation of that focus group. Consensus on the themes was reached for each group.

After the groups’ results were analyzed separately, the research team compared and contrasted the group themes and generated a comprehensive coding scheme for all of the focus groups combined. Emphasis was placed on a comprehensive coding scheme (ie, topics discussed less often were included along with topics discussed more often). Trust was identified as a major theme discussed in all 12 focus groups.

In the next stage of analysis, the edited transcripts and the coding scheme were imported into the qualitative text analysis software package N5 NUD*IST.¹⁵ Two authors (TT and MB) independently coded the first 2 transcripts using the comprehensive coding scheme. Discrepancies in coding were resolved by negotiation. The remaining transcripts were then coded by one of the authors (TT). Unclear or confusing statements were discussed with other team members for coding clarification.

Trust emerged as an important concept and was selected for more detailed, theoretical analysis. For this analysis, a team member (BK) reviewed the transcripts and used the N5 NUD*IST search feature to identify comments in the transcripts related to trust. Then, the research literature was surveyed for frameworks to help us further understand and analyze the data pertaining to physician-patient trust in adolescents. Hall et al’s model of trust between adult patients and their physicians was selected as a framework for categorizing the comments into 5 specific domains.³ One team member (BK) assigned each comment to a category using the data matrix method of Miles and Huberman¹⁶ and noted in which gender-age-health groups it had been discussed. Although the analytic plan called for no categorization of comments that did not fit the schema of Hall et al, all comments discussed by all groups were readily assigned to categories.