Adjustment and coping attempts and adherence all rely on the child and family’s beliefs about the illness, its controllability, treatment, and their own capabilities.
According to Helman (1981) in a classic article:
Faced with an episode of ill-health, patients try to explain what has happened, why it has happened and decide what to do about it. The shaping of the illness and the behavior of the patient—and of those around him—will depend on the answers to six questions:
• What has happened?
• Why has it happened?
• Why to me?
• Why now?
• What would happen if nothing was done about it?
• What should I do about it or whom should I consult for further help?
How the questions are answered, and the behavior that follows, constitutes a ’folk model of illness’.
In other words, patients (and their families) will attempt to come to an under- standing of what the illness is and what it means to them.
The Health Belief Model (HBM; e.g., Janz and Becker 1984) posits that people’s adherence will be influenced by their beliefs that the illness poses a true threat to their health, that the treatment is effective and its benefits outweigh its costs, and they are capable of doing what they need to do to manage the illness. The HBM has a substantial amount of empirical support in the adult literature and has been
27 Health Beliefs
one of the most influential theories of health-related behavior. But to the degree that pediatric adherence results from an interaction between the child and his/her caregivers, the question arises, whose health beliefs should be considered (La Greca and Mackey 2009)? This question is especially important as child and parent health beliefs are not always correlated (Charron-Prochownik et al. 1993).
Parent Beliefs Parent health beliefs have a significant impact on children’s ill- ness management. Adherence tends to be poor when parents are concerned about medication safety or side-effects. One study of children with asthma and their par- ents looked at the difference between parents’ perceived necessity of medication and their concerns about adverse effects or dependency (Kelly et al. 2007). Adher- ence increased as the differential between perceived need and concern widened, and adherence was lowest when concerns exceeded perceived necessity. Minority parents were more likely to have concerns about medication, as were parents who reported using alternative therapies. An even more dramatic demonstration of the importance of parent beliefs can be seen in the recent recurrence of diseases such as measles (declared to be eradicated in the U.S. in 2000) due to caregivers’ erroneous beliefs about the safety of vaccines (Diekema 2012).
It should also be kept in mind that most children have multiple caregivers, not all of whom may agree about the meaning of the illness or importance of treat- ment. For example, we often hear anecdotal reports of multigenerational families in which a grandparent undermines the parent’s attempts to manage a child’s illness by expressing doubt about the need for the prescribed treatment, or a preference for a more traditional alternative medicine approach.
Child/youth beliefs The relation between children’s health beliefs and adherence is much less clear. A systematic review of the relation between children and youth’s health beliefs and adherence (Haller et al. 2008) found conflicting results, with about half of studies showing an association and half showing no association. Meth- odological differences may account for some the discrepancies, but as the authors note, “Unmeasured factors such as parents’ role in affecting adherence behaviors more than beliefs may potentially explain this difference.”
Indeed, few studies have examined both child and parent health beliefs and their relation to adherence within a single study. Bush and Iannotti (1990) adapted the health belief model for children (the Children’s Health Belief Model) and used the model to predict children’s (age 8–14 years) expected medicine use for common (acute) health problems. They first examined child health-belief predictors and then repeated the analysis entering caregiver variables, thus accounting for the effect of caregiver beliefs. Surprisingly, caregiver beliefs accounted only for a small (al- though statistically significant) amount of additional variance, although it should be noted that the outcome was expected medication use, not actual use. (They could not measure actual use because they used a sample of children without chronic illness requiring regular medication management.) It seems plausible if not likely that parents’ beliefs would have a much stronger effect on whether medicines are actually taken or not.
Studies of youth with type 1 diabetes have generally shown positive effects of youth health-beliefs on adherence (although see Urquhart et al. 2002). Skinner and colleagues have consistently found relations between perceived treatment effective- ness and better diabetes self-care (diet, exercise, blood glucose monitoring, and insulin administration; Skinner and Hampson 1998; Skinner and Hampson 2001;
Skinner et al. 2002). Perceived threat of diabetes has also been found to be associ- ated with better adherence (Skinner et al. 2002), but possibly only when the costs of following the diabetes regimen are seen as low (Bond et al. 1992). Interestingly, Bond et al. found that metabolic control was worst when perceived threat and per- ceived cost were both high, suggesting that perceived threat may be a risk factor for poor illness control when youth struggle with management tasks. Studies of youth with asthma have also generally shown positive effects of health-beliefs in the expected directions (Buston and Wood 2000; Rich et al. 2002; Zebracki and Drotar 2004).
Many of the studies examining health beliefs in children have methodological limitations (Haller et al. 2008), especially regarding differences in measurement of the relevant constructs (Rapoff 2010). A promising measure of youth health beliefs is the Beliefs About Medication Scale (BAMS; Riekert and Drotar 2002), a 59- item scale that assesses a number of important constructs of the HBM: Perceived Threat (severity and susceptibility), Positive Outcome Expectancy (i.e., benefits), Negative Outcome Expectancy (i.e., barriers), and Intent. In the validation study of 133 adolescents with asthma, HIV, or inflammatory bowel disease, the BAMS accounted for 22 % of the variance in self-reported medication adherence. Three subscales were positively correlated with adherence and the fourth approached sig- nificance. A shorter version of the scale has also been developed to assess caregiver beliefs (Naar-King et al. 2006) and presumably could be re-adapted for use with children.
Health beliefs, as measured by the constructs of the HBM, may not be good predictors of adherence or illness control for minorities, although few studies have examined this directly. Patino et al (Patino et al. 2005) found no relation between health beliefs and adherence or glycemic control in a sample of youth with a rela- tively high proportion of minorities (Black and Hispanic youth). However, they did find that perceived susceptibility to diabetes was much higher and perceived sever- ity of the illness was lower compared to the findings reported by Bond et al. (1992), suggesting that this sample saw themselves as more vulnerable but perceived the consequences of diabetes as less bad.
Overall, research findings indicate that both parent and youth health beliefs have an effect on children’s adherence. Studies are needed that examine the concordance between parent and child health-beliefs and their effect on illness management. In line with this, a recent study by Herge et al. (2012) found that higher concurrent youth and parent self-efficacy for diabetes was associated with better adherence.
Better understanding of health beliefs may open up new avenues for intervention, although to date interventions that have changed health beliefs have had minimal impact on adherence behavior (Strecher and Rosenstock 1997).
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