Those in their late teens and early twenties who suffer with inflammatory arthritis have to make difficult choices about whether to take powerful drugs that they may have to remain on for the rest of their lives.
But while they claim they make these decisions themselves, new research from Newcastle University and published in Rheumatology reveals that their mother is an important person in assisting them.
Ruth Hart, from Newcastle University’s Institute of Health and Society, was research associate on the study involving young people aged 16-25 from three NHS hospital trusts, including Newcastle Hospitals NHS Foundation Trust.
Research revealed that mothers ‘played a particularly prominent role, providing cognitive practical and emotional support’ and had a considerable influence on the young person’s treatment decisions. Partners played a much less important role in their network of relationships.
Ms Hart said: “Young people with inflammatory arthritis can have severe disease that warrants biological therapies.
“While these drugs can offer considerable short-term benefits, there are short-term risks and the long-term consequences remain uncertain, and this is of particular concern for those who begin taking them early in life.
“Young people offered biologics are confronted with a decision which may have profound consequences at a point when their disease is at its worst and their lives are characterised by change and uncertainty.”
It was clear that while young people claimed they made their own decisions about treatment, the study found that mothers often remained involved in a wide range of ways well into early adulthood, particularly – but not exclusively – where their son or daughter was diagnosed as a child.
The study found that mothers made appointments, took young people to hospital, ordered medication and prepared and administered injections. They also asked questions about drugs, did research, and discussed the pros and cons of treatment with their son or daughter.
Ms Hart added: “Mothers additionally offered emotional support to confront an important decision at a difficult time, essentially ‘being there’ for young people, and providing reassurance, comfort and encouragement.”
Being clear about who is involved in decision-making, and taking into account these important relationships, is essential for health professionals if they are to help young people become independent at a pace appropriate to their individual needs, researchers concluded.
Twenty-five people were interviewed for the study, plus 11 ‘trusted others’ such as mothers, and six health professionals.
Mothers featured prominently in stories of making and enacting decisions in around three-quarters of cases. The majority of these young people were living with their mother at the time of the research.
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