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Young adults with rheumatic disease may claim they want to be independent. But a survey shows that above all (except, of course, you) they rely on their mothers for help and guidance.
Hart RI, Foster HE, McDonagh JE, et al., Young people’s decisions about biologic therapies: who influences them and how?Rheumatology (2015) doi: 10.1093/rheumatology/keu523 First published online: February 5, 2015
Your best ally in achieving adherence when treating a young adult with inflammatory arthritis may be the Mom, say these British researchers.
Their interview study involving 25 patients aged 16-25 who have juvenile inflammatory arthritis (JIA) ankylosing spondylitis (AS), psoriatic arthritis (PsA) or rheumatoid arthritis (RA) found that that mothers play a significant role, not only in decision-making but also aiding in treatment and providing emotional support.
While young adults may profess to making their own decisions with limited input from others (apart from health care professionals), the interviews revealed that they lean heavily on close family, especially their mothers, particularly when they’re still living at home.
The potential impact of biologic drugs on fertility and cancer risk may make teenaged or young adult patients particularly likely to turn to their mothers for guidance.
“Young people offered biologics are ... confronted with a decision that may have profound consequences, at a point when their disease is at its worst and their wider lives are characterized by change and uncertainty,” the authors observe.
Interviews with the 25 young adults, 11 of their “trusted others,” and 6 healthcare providers showed that mothers play a central role: making appointments, taking the young person to the hospital, ordering, receiving and storing medications as well as preparing and, in some cases, giving injections. (“If it was down to me, I wouldn’t do it,” one 22-year-old remarked in an interview.)
The mother’s role is even more pronounced when the patient was diagnosed during childhood.
Friends and boyfriends or girlfriends are also important, especially those who have medical knowledge or can draw upon their own experiences with chronic disease. Surprisingly, even for young adults who are relatively independent, partners appear to play less of a role in these decisions and activities.
Young adults' concerns and decision-making processes are quite different from those of older patients, they caution, and to tailor their support optimally, physicians should take this into account.
Although care teams should foster independence, the authors say, in addition to good medical information their young patients most need “staunch allies.”