The treatment-related experiences of parents, children and young people with regular prescribed medication

Abstract

Background Taking regular medication has been shown to have an impact on the daily lives of patients and their families. Objective To explore the medication-related experiences of patients and their families when a child or young person is prescribed regular medication. Setting A specialist U.K. paediatric hospital. Method Semi-structured face-to-face interviews of 24 parents/carers, children or young people, who had been taking two or more medications for 6 weeks or longer. The themes explored included the medication regimen, formulation, supplies, social aspects and adverse effects. The data was analysed using NVIVO version 11. Main outcome measure The experiences of patients, and their parents/carers, when a child/young person takes regular medication. Results Participants described a range of experiences associated with taking regular medication. Medication-related challenges were experienced around the timing of administration which was managed over 24 h rather than waking hours. Updating medication doses for administration at school was often delayed. Unintended nonadherence was cited as the biggest challenge with a range of strategies employed to manage this. The internet was commonly used as a source of additional information accessed for reassurance and adverse effects but there were varying experiences of using patient forums/help groups. Other challenges included the adequacy of information, travelling with medication, formulation issues, arranging supplies and adverse effects. Conclusion Patients and parents experience many challenges with children’s medication. Individualised treatment options should be considered. Further research is required to determine how these experiences may be managed including the role of paediatric medication review.

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“…Taking several medications simultaneously or starting to take a medication that is prescribed for the first time may bring with it challenges for many users [7,8]. These challenges may include integrating the medication into the daily routine at the right time, understanding the medication and its effects and side effects [9], or dealing with concerns about medication safety [10] and efficacy.…”

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“…These may include adverse events, the burden on day-to-day life, and the impact on social, financial, psychological, and functional well-being. 4–8 …”

“…These may include adverse events, the burden on day-today life, and the impact on social, financial, psychological, and functional well-being. [4][5][6][7][8] Health-related quality of life (HRQoL) is an essential treatment goal in pharmacotherapeutic interventions. However, most widely used HRQoL measures are not sensitive enough to detect the changes in HRQoL related to pharmacotherapy.…”

<p>Unlicensed “Special” Medicines: Understanding the Community Pharmacist Perspective</p>

“…50,51 The resulting increased involvement of patients in their care had to be achieved by maintaining the balance of providing additional information about unlicensed "special" medicines without causing concern. Participants gave examples of concerns raised by patients consistent with that in the literature, showing increased concern once fully informed about the use of unlicensed medicines, 19,52,53 one participant explained how parents often questioned the need for the unlicensed medicine prescribed for their child, suggesting that the concerns and perceptions highlighted may lead to non-adherent behaviours. 54,55 Literature reports the successful use of a range of educational interventions to increase patient awareness on medication use for different conditions.…”