This article discusses the serious nature of adherence to medical regimens which has become a major concern for parents, children and health care providers alike. Identified by physicians as particularly high risk, are children diagnosed with renal disease due to frequent medical non-adherence which can result in devastating effects. The authors point out that medical treatment for these children is difficult, consisting of many different requirements, responsibilities and demands placed on the parents and children, so medical non-adherence in this population needs to be responded to with compassion and understanding, as opposed to frustration, which is likely to make matters worse.
In an aside, the authors discuss the findings in the literature regarding health care providers who display signs of intolerance, frustration, or other types of negativity noticeable to family members, focusing on the importance of the perceived quality of the relationship with health care providers, especially in cases involving children. Research suggests that families with an ill child, who perceive criticism, judgment, absence of direct communication or lack of inclusion in decision making, have significantly worse outcomes (e.g. physical, emotional, mental, and overall perceived quality of life), compared with families who feel comfortable openly communicating with their health care provider and perceive responses positively, defined as indicating empathy, understanding and willingness to explore alternative options. This has been shown even when others observing the interactions interpret the situation as either neutral or far less negative than perceived by the family.
The authors assert that “right” or “wrong” aren’t meaningful distinctions when there is poor communication or perceived negativity in the relationship between health care providers and family. Thus, whatever perceptions have created the problem, real or not, are viewed as real by those experiencing them. Open, honest communication between each participant in the relationship to correct misperceptions often can alleviate the problem. At times however, the relationship is a mismatch of more permanent traits such as personality styles, or belief systems. In such cases, the authors suggest it is in the family’s best interests to refer them to another provider who is a better match for their individual characteristics.
It is recommended that these findings be disseminated among physicians, since a poor family – provider relationship will likely make the provider ineffective in decreasing adherence problems even with proven techniques. The previous point is emphasized as treatment for chronic renal diseases is intensive, necessitating multiple invasive, painful procedures such as kidney biopsies and dialysis, as well as additional complex medical restrictions, exercise programs, diet alterations and multiple medications which can vary in dosage, times of day/week taken, or method of administration (e.g. pills vs. injections). Continuous failure to follow this regimen can result in renal failure necessitating transplant, or death. Due to the seriousness of this problem, it is important to ascertain what factors may help improve child medical adherence which, though not included in this particular study, also encompasses the patient/family – health care provider relationship.
The authors strongly advocate conducting additional research to examine interaction variables in serious chronic illness populations requiring complex, confusing medical regimens, increasing the likelihood of frustration, fear and other negative emotions especially with the prevalence of growing case loads and increased treatment restrictions dictated by insurance companies.
Previous studies have also identified optimism to be a critical factor in adapting to a chronic illness. To date, while many studies have demonstrated the positive effects of optimism on adaptation to a chronic illness, few have focuseeed on the relationship between optimism and physical adjustment in children with endocrine disorders. This study was undertaken to expand the knowledge in this area by exploring the relationship between child optimism and medical adherence in children with renal disease. In this study however, contrary to expectations, the investigators found that there was a negative association between parent and child perceptions of child optimism and parent and child perceptions of child medical adherence. In other words, as one goes up the other goes down!
The authors suggest a plausible explanation for this surprising outcome, specifically that optimism may cause positive expectations to be formed about the future, which are seen as entirely independent of the individual’s actions. So if children come to believe the future will be wonderful regardless of anything they do, they will be less likely to focus on the importance of their medical regimen in helping to bring about this positive future, resulting in non-adherence. Another possibility not mentioned by the authors is that some children may become so overwhelmed by the complex, long term treatment, and potential of dialysis, kidney transplantation or death, that they convince themselves that everything will be fine, pushing the necessities of treatment out of their mind in order to cope with their fears. Thus, optimism may be functioning as denial resulting in avoidance of what they need to do to take care of themselves. It is well established that a positive nature, which includes positive thoughts, patterns of interacting with others, and one’s view of the world in general, create stronger abilities to cope with problems and greater life satisfaction overall. A more detailed analysis of the construct of optimism is clearly needed to ascertain how to best define the term, identify specific aspects within it, examine if it can result in negative outcomes and if so, under what circumstances and why? As it is said, the most valuable research is that which generates more questions than it answers.