This study described a number of supportive and non-supportive behaviours provided by family and friends to adolescents with CF. The support covered many aspects of disease management including daily treatments, routine clinic visits, hospitalizations, managing health information among peers and dealing with emotional distress related to the illness. Across these aspects of care, there were differences in the amount and type of support provided by family and friends. However, both groups appeared to influence disease management during adolescence.
Adolescents reported similarities and differences in the treatment-related support they received from family and friends. Both provided treatment reminders and treatment monitoring (e.g. asking about treatments), and helped complete the treatments. Families, however, tend to provide tangible support of treatment such as preparing medication or providing rewards for completing treatment, whereas friends tend to provide more relational support such as encouragement. Beyond the type of support, the frequency of social support appeared to differ between family and friends. Adolescents indicated that family members provided treatment-related support on nearly a daily basis, while friends provided treatment-related support on a weekly or biweekly basis.
In terms of unwanted behaviours, family and friends nagged adolescents about doing their treatments. They differed, however, in other unwanted or non-supportive treatment-related behaviours. Families tended to engage in more conflict around treatment while friends tended to plan activities that conflicted with treatments. Results from adolescents’ perceptions of treatment-related support suggested the manner, timing and context of the behaviour contributed to adolescents’ perception of its supportiveness. It remains to be seen, however, if these same components contribute to disease management outcomes, such as treatment adherence. It is also evident that adolescents recognized the importance of treatment-related support and were appreciative of the support they received, even when they found it to be annoying. They also recognized that behaviours such as persistent treatment reminders might be most useful when there is limited desire to complete the treatment, but also mentioned that the reminders are most annoying when desire is low. Understanding the relationships among the actual provision of support, adolescents’ perceptions of that support and disease management outcomes is an important area of future research that will aid clinicians in knowing what aspects of treatment-related support are most important to improving management of CF.
Outside of daily treatments, results suggested that youth received different types of support from family and friends. Similar to findings for treatment-related support, family seemed to provide more tangible support, especially during clinic visits and hospitalizations, while friends tended to provide more relational support, especially around exercise and managing social networks during periods of illness (e.g. giving friends updates about participant’s condition). The unwanted behaviours also tended to be distinct between family and friends, with family members engaging in more controlling behaviours and friends in more teasing and gossiping. One commonality between unwanted behaviours from both family and friends was a focus on privacy and control of health information – adolescents did not like being asked unwanted questions about their illness or their health information being shared without their permission. This finding regarding privacy suggests adolescents’ concerns about disclosure of their diagnosis to friends may be an important barrier to accessing support from their peer networks.
Peer support may not be available or accessed by all adolescents. There were differences in how adolescents informed their friends of their diagnosis. While a majority (58%) informed their entire friend network, a smaller percentage (25%) told only a few select friends, and 17% of the adolescents had not voluntarily shared their diagnosis with their friends. It is possible that the one in six adolescents who did not voluntarily disclose their diagnosis had limited access to treatment-related support from friends. Recent work has suggested that >95% of adults with CF have disclosed their diagnosis to at least one friend (Modi et al. 2010
), suggesting that adolescents may decide to disclose their disease as they mature. The decision to disclose can be a personal and complicated process. Disclosure in adults is related to disease severity, gender and the nature of the relationship (e.g. family, friend, colleague) (Modi et al. 2010
), but little is known about why adolescents with CF choose not to disclose their diagnosis to friends. Understanding this process may provide insight into how best to promote better treatment adherence in adolescents (Shroff Pendley et al. 2002
While this study represents a valuable step in describing social support for adolescents with CF, it had several limitations. First, similar to prior research on social support in CF, the sample size was small and only included adolescents’ perspectives. The purpose of the study was to identify a broad range of supportive and non-supportive behaviours that support disease management in this population and thus did not focus on the specifics around each component of treatment (nebulized medications, pancreatic enzyme supplements, airway clearance and dietary modification). It is likely that some behaviours may be more helpful during some types of treatments than others. For example, reminders around a frequent but relatively simple task such as taking enzymes with each meal may be more effective than reminders for more burdensome tasks such as nebulized medications. Similarly, spending time with the adolescent during treatment may be more helpful during the more burdensome treatments than during the relatively simple treatments. Finally, this study did not include measures of disease management, limiting our ability to examine how social support is related to health outcomes.
The findings from this study contribute to a growing body of literature detailing specific supportive and non-supportive behaviours provided by family and friends to adolescents with CF. Identifying the most common supportive and non-supportive behaviours for adolescents with CF is important for understanding and possibly attenuating the decrease in adherence commonly reported during adolescence (DiMatteo 2004
). Before such progress can be realized, it will be important to understand which family and friend behaviours are related to improved CF management. Studies linking social support to improved CF management are needed and are in progress (Barker et al. 2010
). When examining these links, our results suggested that the frequency of support should be examined separately from adolescents’ perceptions of supportiveness. For example, routine treatment reminders may be viewed as annoying or labelled as ‘nagging’, but they may also facilitate better adherence than infrequent reminders. Understanding which behaviours promote better disease management may assist healthcare teams in facilitating more effective support from family and friends.