First we describe parental monitoring behaviors and youth reactions to these behaviors. This data is followed by a description of how and why youth disclose illness-related information and parental reactions to these disclosures. Illustrative quotes are incorporated in table format and ) to substantiate and describe key thematic concepts.
Parent Monitoring Strategies and Youth Reactions
Youth Disclosure and Parent Reactions
Parent Monitoring Behaviors and Youth Reactions
We found that parents use a variety of strategies for obtaining information about their children’s regimen adherence, illness symptoms, and other indicators of well being. Both parents and youth reported that parents acquire information by tracking materials related to treatment adherence (e.g., checking inhalers, counting pills, looking for unused test strips) and staying tuned into the presence of illness-related symptoms and behaviors. Not surprisingly, both youth and parents also commented that parents frequently remind or “nag” about treatments and ask if treatment tasks are complete. Additionally, some parents require that children perform treatments in the visual presence of the parent. In this way, parents are able to stay knowledgeable about their children’s regimen adherence by directly observing completion of treatment tasks. According to both youth and parents, parents also attempt to control their children’s illness by restricting activities that might exacerbate the illness and by using time limits to encourage regimen adherence (e.g., requiring that the child complete a treatment before going outside to play). Parents and youth noted that parents employ a repertoire of strategies in concert to monitor in their child’s illness.
Parents expressed a sense of duty, purpose, and responsibility with respect to their role in monitoring their children’s treatments. At the same time, parents recognized the need to balance parental control with the child’s need for autonomy and ability to manage the illness and treatment regimen. Facilitating treatment adherence, while encouraging independence, appears to be a complicated task and potential source of stress for some families. Parents described a process of adjusting their child’s responsibilities for self care activities along with the intensity with which they monitored these activities. In particular, some parents reported that they require their children to “prove” that they can manage their illness management successfully before permanently decreasing the level of monitoring the parents provide (e.g. decreased reminding, and limit-setting). Several parents explicitly noted that adolescence is a particularly difficult time for this “calibration” process.
Youth’s reactions to parental monitoring behaviors vary; reactions can range from irritation to ambivalence to appreciativeness. Generally, it appears that youth do not mind their parents’ monitoring behaviors, as long as they perceive them to be warranted. For example, youth appear to recognize that parental reminders are helpful and necessary at times. However, youth sometimes perceive parental monitoring as excessive, interrupting, or potentially embarrassing. Youth also reported believing that parental monitoring should decrease as they get older. Participants’ comments also suggest that youth respond to parental control attempts in a variety of ways. Responses include complying, complaining, or attempting to change the parent’s mind (i.e., persuading).
Youth Disclosure and Parent Reactions
Based on youth participant comments, it appears that youth disclose information freely (i.e., unsolicited by parents), as well as in response to their parents’ requests for information. It does not appear that these two types of disclosure are mutually exclusive such that youth only disclose information freely or only when prompted by their parents. Youth described instances of freely disclosing information to their parents for a specific purpose such as to obtain help with a treatment (e.g., counting carbohydrates; whether to take rescue inhaler), to get the parent’s opinion, or to have the parent make a decision (e.g. to call the doctor, adjust medication or stay home from school).
Youth also disclose information in response to parental requests for information. Parent requests ranged from informal routine inquiries (e.g., How are you feeling today? What did you eat for dinner?) or may be directly related to a perceived health issue. Overall, youth appear to have confidence that their parents can handle problems by facilitating treatments and helping to make decisions, although some children spoke about waiting until they could not “handle it” by themselves prior to engaging their parents. Parents also commented that the youth sometimes deliberately withhold or minimize the severity of health related information. Common reasons for not wanting to disclose information are to avoid unpleasant treatments or perceived negative consequences and to prevent their parents, usually their mothers, from worrying.
Based on both parent and youth report, parents appear to react to their children’s disclosures in a variety of ways. Depending on the perceived severity of the disclosed information, parents might independently make treatment-related decisions, involve the child in decision making, probe for more information using guided questioning, or simply decide not do anything (e.g. wait and see). According to youth, parents sometimes respond with appropriate concern, while at other times they respond by over- or under- reacting to the disclosed information.