Edinburgh Napier University

  Background: Non-adherence to prescribed treatments is the primary cause of treatment failure in pediatric long-term
conditions. Greater understanding of parents and caregivers’ reasons for non-adherence can help to address this
problem and improve outcomes for children with long-term conditions.
Methods: We carried out a systematic review and thematic synthesis of qualitative studies. Medline, Embase,
Cinahl and PsycInfo were searched for relevant studies published in English and German between 1996 and 2011.
Papers were included if they contained qualitative data, for example from interviews or focus groups, reporting the
views of parents and caregivers of children with a range of long-term conditions on their treatment adherence.
Papers were quality assessed and analysed using thematic synthesis.
Results: Nineteen papers were included reporting 17 studies with caregivers from 423 households in five countries.
Long-term conditions included; asthma, cystic fibrosis, HIV, diabetes and juvenile arthritis. Across all conditions caregivers
were making on-going attempts to balance competing concerns about the treatment (such as perceived effectiveness
or fear of side effects) with the condition itself (for instance perceived long-term threat to child). Although the barriers
to implementing treatment regimens varied across the different conditions (including complexity and time-consuming
nature of treatments, un-palatability and side-effects of medications), it was clear that caregivers worked hard to
overcome these day-to-day challenges and to deal with child resistance to treatments. Yet, carers reported that strict
treatment adherence, which is expected by health professionals, could threaten their priorities around preserving family
relationships and providing a ‘normal life’ for their child and any siblings.
Conclusions: Treatment adherence in long-term pediatric conditions is a complex issue which needs to be seen in the
context of caregivers balancing the everyday needs of the child within everyday family life. Health professionals may
be able to help caregivers respond positively to the challenge of treatment adherence for long-term conditions by
simplifying treatment regimens to minimise impact on family life and being aware of difficulties around child resistance
and supportive of strategies to attempt to overcome this. Caregivers would also welcome help with communicating
with children about treatment goals.