An investigation into the experiences, and associated issues, concerning children and young people prescribed regular medication

Abstract

There is little information concerning the treatment-related experiences when children or young people are prescribed long-term medication. To identify treatment-related problems following the initiation of a new medication, a telephone survey of parents or children/young people was undertaken. Participants were asked about information requirements, medication-related concerns, administration, adverse effects, adherence and their experiences of arranging medication supply. The role of community pharmacists in supporting children taking medication was explored through a postal survey. Pharmacists were asked about their experiences of undertaking medication review in this group and the types of medication-related support this cohort sought from them. These included: advice about adherence, requests for information and the type of problems reported to them including administration and supply issues. The treatment-related experiences of children, young people and their parents/carers when a child takes regular medication were identified through interviews with patients and their parents/carers. Participants were asked to describe their experiences of: the impact of medication on their daily lives, the formulation, adverse effects, negotiating the healthcare system around supply of medication and the social burden of medication. The first three studies identified that some parents made changes to their child’s medication without informing a healthcare professional. Therefore, a postal survey of parents/carers of children prescribed long-term medication was undertaken. Parents/carers were asked about delaying/with-holding/not initiating treatment, making changes to the administration, altering the dose and adjustments to the regimen to make it compatible with daily life. This research has identified that parents/carers and patients experience many challenges when a child is prescribed long-term medication. Greater engagement is required to ensure that the treatment choice and regimen are achievable for patients and their parents/carers. Further research is required to identify effective interventions to support this cohort, one of which could be a paediatric medication review.