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Seizure: European Journal of Epilepsy
journal homepage: www.elsevier.com/locate/seizure
Review
Barriers and enablers to antiseizure medication adherence in children with
Epilepsy: A systematic review using meta-ethnography
Eric Amankona Abrefa Kyeremaa 3’ , Sion Scotta, Caroline Smith3 , Charlotte Lawthom, Andy Stewartc, Majed Alorabi3 , David Wright3
a School of Healthcare, University of University Leicester, LE1 7RH, United Kingdom
b Aneurin Bevan University Health Board, Newport, NP11 5GH, United Kingdom
c Desitin Pharma Ltd, Milton Keynes, MK10 9RG, United Kingdom
ARTICLE INFO
ABSTRACT
Keywords:
Epilepsy
Adherence
Children
Antiseizure medication
ASMs
Meta-ethnography
Adherence to antiseizure medications (ASMs) is essential for seizure control in children with epilepsy. However, multiple factors influence adherence, leading to varied treatment outcomes. The aim of this study is to explore the barriers and enablers to antiseizure medication adherence in children with epilepsy by synthesising qualitative studies. This systematic review and qualitative synthesis followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guidelines. The critical appraisal skills programme (CASP) was used to assess the quality of the included studies. A comprehensive search was conducted in CINAHL, PubMed, SCOPUS, EMBASE, PsycINFO databases. Qualitative studies were extracted, analysed, and synthesised using meta-ethnography approach. Of the 20 studies identified, 18 were qualitative and remaining 2 were mixed method studies. Barriers included unpleasant medication taste, difficulty in swallowing, adverse effects, poor communication with healthcare providers, and stigma. Enablers included suitable taste of medication, easy to swallow, equity to healthcare, trust in ASMs, and access to mobile technology. Findings indicate that adherence barriers differ by age group. Younger children primarily face challenges related to medication formulation, while older children and adolescents experience barriers linked to stigma. This study provides deeper insight into the complex factors affecting ASM adherence in children with epilepsy. Addressing these barriers through individualized treatment approaches, caregiver education, improved healthcare communication, and accessible healthcare services could enhance adherence and improve health outcomes.

1.		Introduction
Epilepsy is a common long term neurological condition affecting children and young people (Royal College of Paediatrics and Child Health, 2020). According to the Royal College of Paediatrics and Child Health (2020), epilepsy affects about 1 in 220 children under 18 years. It is estimated that 63,400 children under 18 years in the United Kingdom (UK) have epilepsy [1]. The World Health Organisation (2024) has stated that 50 % of epileptic cases have an unknown cause with the remaining cases caused by brain damage during childbirth, congenital abnormalities, brain tumour, genetic conditions and brain infections such as meningitis.
Whilst antiseizure medications (ASMs) are estimated to control approximately 7 out of 10 people with seizures [2], research shows that non-adherence with ASMs ranges from 25 % to 75 % globally (WHO, 2003) resulting in poor seizure control, increase mortality, longer hospital admissions, increased healthcare costs and reduced quality of life [3-5].
Several studies have identified the factors associated with ASMs nonadherence in children with epilepsy (CWE) [6,7-11]. Factors such as parent marital status, family socioeconomic status, forgetfulness, low educational status, availability of ASMs, type of ASMs prescribed, polytherapy (treatment with two or more ASMs) longer period of epilepsy condition and age of the child are barriers identified as being related to ASM non-adherence [12-15].
Medicine-related factors such as type of medication, using newer ASM and polypharmacy medicine-related factors have been shown to be associated with non-adherence with antiseizure medications [10], providing some insight into what could be changed to improve patient outcomes. Many of these related ‘factors’ are however identified because

* Corresponding author.
E-mail address: eaakl@leicester.ac.uk (Ε.Α.Α. Kyeremaa).
https://doi.Org/10.1016/j.seizure.2025.06.016
Received 4 March 2025; Received in revised form 15 May 2025; Accepted 17 June 2025
Available online 22 June 2025
1059-1311/© 2025 The Authors. Published by Elsevier Ltd on behalf of British Epilepsy Association. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
they are collected in routine practice but, in themselves, may not be the direct cause of non-adherence but proxies for underlying reasons.
The aim of this study is therefore to use the meta-ethnography approach to explore the reported barriers and enablers (determinants) to ASMs adherence in CWE to inform the design of interventions to improve adherence.
2.		Method
2.1.		Inclusion and exclusion criteria
The systematic review protocol is registered on PROSPERO (CRD42024600476) and followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guidelines [16]. Only papers published in English were included in this study. Qualitative and mixed-methods studies where findings identified barriers and enablers to ASMs adherence for children under 18 years with epilepsy were included in the study. Peer reviewed articles with empirical data were included in the study and abstracts, systematic reviews, posters, conference articles and quantitative studies were excluded.
Table 1
2.2.		Search strategy
The search strategy combined terms Adherence, Epilepsy, children and qualitative terms to search for relevant articles for the study. A scoping search was initially performed in PubMed to identify appropriate Medical Subject Headings (MeSH) for each term, ‘Epilepsy’ was expanded to include ‘Nodding Syndrome', Convulsion, Seizure and neurologic. Final searches were conducted on 18th October 2024. The search was conducted in CINAHL, PubMed, SCOPUS, EMBASE, Psy- cINFO databases. Google Scholar was searched to identify relevant articles missed in the initial search. Additionally, reference lists of the selected articles were searched to identify any potential studies suitable for inclusion. See Appendix 1 for full search strategy.
Table 2
2.3.		Source of evidence selection
All search results were imported into Endnote 21 reference manager software where de-duplication took place [17]. The remaining references were imported to Rayyan Software where further de-duplication and screening of the studies were conducted [18]. Firstly, titles and abstract were independently screened by the lead author (EK) and second reviewer (MA) using the inclusion criteria as a benchmark.
Table 1
Eligibility criteria.
Inclusion criteria
Population	Children under 18 years old	
Outcome	Data relating to barriers and/or	
Barrier and/or enablers must be explicitly stated by authors or appear to be an important part of the findings.
Setting	enablers ASMs among children with epilepsy.
Children prescribed ASMs for epilepsy	
Study design	treatment.
Primary studies	
Qualitative and Mixed Method studies.
Publication type	Peer-reviewed articles with empirical	
Exclusion criteria
Adult population prescribed ASMs for epilepsy treatment.
Barriers and/or enablers NOT related to ASMs in children with epilepsy.
Children who are not prescribed ASMs.	data.	
Table 2
Summary of search keywords.
Adherence	Epilepsy	Children	Qualitative studies	
“Adhere*'’ OR “non-	"Epilep*" OR	“Paediatric*”	“barrier*” OR	
adhere*” OR	“seizure*” OR	OR “infant*” OR	“enabler*” OR	
“nonadhere*” OR	“neurologic*”	“neonate*” OR	“facilitator*” OR	
"complian*" OR	OR	“newborn*” OR	“experience*” OR	
"non-complian*"	"convulsion*”	“child*” OR	“perspective*” OR	
OR	OR “Nodding	“adolescent*”	“opinion*” OR	
"noncomplian*"	Syndrome*” OR	OR “parent*”	“view*” OR	
OR “persist*” OR	“Tourette	OR -caregiver*··	“qualitative*” OR	
"non-persist*" OR	Syndrome*”		“focus group*” OR	
"concordan*" OR	NOT “ketogenic		“interview*” OR	
"refus*"	diet**” NOT		“ethnograph*” OR	
	"surg*" NOT
“Brain injur*” NOT “Brain
trauma*” NOT		“observation*” OR
“survey*” OR
“questionnaire*”
OR “mixed	
	“Multiple
Sclerosis*” NOT		method*” OR “mixed-method*”	
	“MS"		OR “process evaluation*” OR “theme*”	

Following this, full texts of remaining articles were retrieved and screened for potential eligibility against the inclusion criteria by the two independently reviewers as advised by Waffenschmidt et al., (2019) [19]. All discrepancies at each stage were noted and resolved in face-to-face meeting.
2.4.		Data extraction
Summaries of the studies were reported using a Microsoft Excel spreadsheet. The extraction form was iteratively modified as needed during this stage. The main headings of the form were author(s) of the studies, title, year of publication, study design, number of participants, country where the study was conducted, age range of participants and summary of findings from the selected articles. MA, the second reviewer randomly choose 5 studies to review the extracted information, where discrepancies existed, this was be documented and resolved by discussion or by the third reviewer (DW).
2.5.		Risk of bias
The Critical Appraisal Skills Programme (CASP) checklist was used to assess the methodological vigour, rigour and relevance of the qualitative studies which was independently done by ΕΚ and MA. The CASP checklist used to frequently assess the methodological quality is suitable for qualitative studies with different approaches [20]. All selected papers for this study were assessed using the 10-item checklist with focus on design, recruitment of participants, collection of data, research-participants relationship, ethical issues, data analysis and the relevance of the results (CASP, 2023). This is rated using yes, no or can’t tell. In situations where there was difference in opinion between the two assessors, consensus was achieved through discussion. The purpose of the quality assessment was to provide readers with clear interpretation of the findings rather than exclusion of selected studies. (See Table 3).
2.6.		Data synthesis
Data was synthesised using a meta-ethnography approach, based on Noblit and Hare’s [21] seven stages, to interpret findings across selected articles. Meta-ethnography was chosen for its capacity to create new conceptual insights from qualitative research by reinterpreting themes and concepts from primary studies aiming to understand the barriers and enablers of ASM adherence in CWE [22,23].
Initially, in order to consider the relationship between participant’s quote (first order constructs) and author's interpretation (second order
Table 3
Quality assessment of qualitative studies (CASP).
Study	QI. Aims of the research	Q2.
Appropriate qualitative method	Q3.
Appropriate research design	Q4.
Appropriate recruitment strategy	Q5. Appropriate data collection method	Q6. Relationship between researcher and participants	Q7.
Ethical issues	Q8. Data analysis	Q9.
Clear statement of findings	Q10.
Value of the research	Total	
[1]											9	
[2]											8	
[3]											8	
[4]											8	
[5]											7	
[6]											8	
[7]											8	
[8]											8	
[9]											8	
[10]											8.5	
[11]											8	
[12]											9	
[13]											8	
[14]											8	
[15]											8	
[16]											10	
[17]											7	
[18]											8	
[19]											8	
[20]								•			9	

l.Was there a clear statement of the aims of the research? 2.1s a qualitative methodology appropriate? 3. Was the research design appropriate to address the aims of the research?4. Was the recruitment strategy appropriate to the aims of the research? 5. Was the data collected in a way that addressed the research issue? 6. Has the relationship between researcher and participants been adequately considered? 7.Have ethical issues been taken into consideration? 8.Was the data analysis sufficiently rigorous? 9. Is there a clear statement of findings? 10. How valuable is the research? Yes: □ No:• Cant' tell: | |. Scores: Yes: 1.0 Can't tell: 0.5 No: 0

constructs) from each studies, data was extracted and carefully reviewed and coded using NVivo software [24]. The software was used to organize this data, aiding in the identification of common patterns or conflicting themes.
The analysis looked at relationships between studies, noting both reciprocal (similar) and refutational (contrasting) findings, which supported the synthesis of key concepts of this study [25]. To integrate
findings, recurring themes were organized into overarching categories, specifically “barriers" and “enablers”, allowing for a coherent and meaningful synthesis across studies [22], MA, the second reviewer, verified the synthesized themes to strengthen the validity of interpretations. The final synthesis integrated both first, second-order constructs and researchers' interpretation (third order) to produce new insights into the barriers and enablers of ASM adherence in CWE,

thereby enhancing understanding and informing practical implications.
Fig.1
2.7.		Quality assessment of fendings
Systematic reviews are used to guide decision making hence they should be transparent, reproducible and use robust approach to assess evidence [26]. The GRADE-CERQual guidance was used to assess the confidence in the findings of this systematic review. The GRADE-CERQual helped to appraise the overall quality of this qualitative synthesis [27]. This study used the four components: methodological limitations, coherence, adequacy of data and relevance to assess the confidence in the findings of this research study. The confidence of the identified themes was graded either high, moderate or low based on the ratings. Of the 25 subthemes identified 9 were of high, 12 were of moderate and 4 were of low confidence.
3.		Results
3.1.		Literature searches
The search performed using the key terms generated 13,378 potentially relevant studies. After the screening and selection process 20 papers were included in the synthesis as illustrated in Fig 2.
3.2.		Study characteristics
This qualitative synthesis included 18 qualitative and 2 mixed- method studies. The study designs varied, with 13 using interviews, 2 combining interviews and observations, 1 using focus group discussions, 3 incorporating both interviews and focus groups, and 1 employing a mix of interviews, focus groups, group activities, and observations. The studies were geographically diverse, with 4 from the United Kingdom, 3 from Uganda, 2 each from Kenya, the USA, Taiwan, and Canada, and others from Sri Lanka, Malaysia, Italy, South Africa, Singapore, and China. Six studies focused solely on parents and caregivers, excluding children, which may limit the understanding of children’s first-hand experiences with medication adherence. The age range of children included was 5 to 19 years; however, data from 19-year-olds were excluded, as the review considered only children under 18. Similarly, one study that included adults with epilepsy had their data excluded. Another study involved community members, whose data were also omitted to align with the selection criteria. It can be seen from Table 4 that the majority of the participants were recruited from tertiary hospitals. A summary of the selected studies is provided in Table 4.
4.		Main results
Barriers and enablers to antiseizure medication adherence among children with epilepsy (CWE) were categorized into four key themes: medication-related issues, knowledge of epilepsy and antiseizure medication, healthcare provider-related issues, and family-related factors. Each theme was further divided into subthemes, differentiating between barriers and enablers to adherence. Table 5 illustrates the key themes, sub themes and examples of first order and second order constructs used in the synthesis.
4.1.		Medication related issues
4.1.1.		Mistrust in medication (Barrier)
Some parents expressed doubt about the effectiveness of epilepsy medications, questioning their impact on seizure control and potential

Fig. 2. PRISMA flow diagram.

Table 4
Summary of selected studies.
Study ID	Author(s)	Title	Year	Study Design	Country	Participant Count and Type	Recruitment Setting	Age Range	Summary of findings	
01	Catriona Moffat, Liam Dorris, Linda Connor, Colin A. Espie	The impact of childhood epilepsy on quality of life: A qualitative investigation using focus group methods to obtain children with epilepsy's perspectives on living with epilepsy	2009	Qualitative:
Focus Group	UK	children with epilepsy (22)	Tertiary Hospital	7yrs 4months
-12yrs 6months	Findings: Themes were presented using the children's language. Two major themes were identified, “things to do with growing up” and “things to do with epilepsy,” with five and four subthemes, respectively	
02	Roshini
Murugupillai, Jithangi Wanigasinghe, Ravi Muniyandi, Carukshi Arambepola	Parental concerns towards children with epilepsy and adolescents with epilepsy in Sri Lanka—Qualitative study	2016	Qualitative:
Focus Group, Indepth-interviews	Sri Lanka	Parents (16), Caregivers (22)	Community	5-18 years	Findings: Parental concerns were spread among seven themes that emerged from the content analysis. These concerns were about the child's functioning in areas such as physical, behavioural, psychological and social, education, concerns related to anti-epileptic therapy and epilepsy as a disease. Parents were more concerned about their child’s safety, educational achievements and future prospects in terms of employment and marriage. Unpredictability of seizures, fear of stigma and unawareness of epilepsy were the main reasons voiced by the parents for having such concerns. Increased concern and perception of vulnerability was seen among parents whose children had epilepsy and co- morbid illness	
03	Su Woan Wo, Lai Choo Ong, Wah Yun Low, Pauline Siew Mei Lai	Exploring the needs and challenges of parents and their children with epilepsy in childhood epilepsy care: A qualitative study	2018	Qualitative: Indepth-interviews	Malaysia	Parents (18), children with epilepsy (15)	Tertiary Hospital	8-17years	Findings: The experiences of parents and theirCWE could be divided into two time frames: “experiences during a child's first seizure” and “experiences whilst growing up with epilepsy".	
04	Michelle Webster	Similarities and differences in the meanings children with epilepsy and their parents attach to epilepsy medications	2017	Qualitative: Interviews	UK	Parents (28), children with epilepsy (13) and Siblings (14)	Charities	5-13 years	findings show that although both parents and children viewed medications as an unpleasant necessity, parents’ concerns centred on the perceived side effects of medications, whereas	

Table 4 (continued)
Study ID	Author(s)	Title	Year	Study Design	Country	Participant Count and Type	Recruitment Setting	Age Range	Summary of findings	
05	Franco Galletti,	An insight into children	1998	Qualitative: Semi	Italy	children with	Tertiary	6-18 years	the children commented on the process of ingesting medications.
Additionally, some of the children had to learn that their medications were a preventative measure, as they originally viewed them as a cure. Furthermore, among the children, it was found that treatment could be seen as either a positive or negative symbol of difference. Lastly, emergency medications were often viewed as a saviour, particularly by parents.
Findings: A poor	
06	Anna Rinna and Celeste Acquafondata
Gehane El	with epilepsy’s and adolescents’ experience of seizures and epilepsy
Attitudes and practices	2006	Structured Interviews
Qualitative:	Kenya	epilepsy (41)
Parents,	Hospital
Community	6-9 years	relationship was found between seizure severity and patient’s discomfort, and the image of the disease appeared independent of the experience of the seizures. As regards the epilepsy itself, patients seemed to suffer from generic problems rather than from specific concern about it, but some adolescents inserted their thoughts about the disease into reflections on their existential condition.
Findings:The	
07	Sharkawy, Charles
Newton, Sally
Hartley
Irene Farisai	of families and health care personnel toward children with epilepsy with epilepsy in Kilifi, Kenya
A qualitative study	2021	interviews, focus group discussions, group activities, and observations
Qualitative:	South	children with epilepsy, Grandparents and Caregivers.
Caregivers (12)	Tertiary	6-16 years	responses illustrate both positive and negative attitudes, underpinning a wide variety of practices toward children with epilepsy. They also indicate the use of several types of services that vary between the traditional, medical, educational, and religious. The choice of these services was affected by different socioeconomic factors, the complex interrelationship of which offers some explanation for the underutilization of AEDs.
Findings: All	
	Muchada, Jo M. Wilmshurst, Nakita Laing, Elin Haf	exploring caregivers’ experiences, perspectives, and expectations for		semi-structured interviews	Africa		Hospital		participants had ideas about the cause of epilepsy, but many did not think that	

Table 4 (continued)
Study ID	Author(s)	Title	Year	Study Design	Country	Participant Count and Type	Recruitment Setting	Age Range	Summary of findings	
08	Davies, Karen
Fieggen
Cui, Hengyu Zhou,	precision medicine in epilepsy in South Africa
Behavioral Dilemmas	2023	Mixed Method:	China	children with	Tertiary	12-18	epilepsy is a medical condition. There were several difficulties in adhering to medical treatment which was sometimes combined with traditional remedies and practices. Understanding of Precision Medicine in the context of research was limited and although participants were unclear about benefits, most were optimistic about the future. mHealth devices introduced new feelings and challenges for many participants. The four themes which emerged were: (1) Cause of epilepsy: uncertainty and conflicting views; (2) Need for healing; (3) PME mHealth devices; and (4) Feasibility of implementation of PME initiatives.
Findings: Seven	
09	Wenjin Chen, Shuangzi Li & Xianlan Zheng
Catherine Abbo,	and Support Requirements of SelfManagement for Chinese Adolescents with Epilepsy During Transition Readiness: A MixedMethods Study
Qualitative evaluation	2019	questionnaire and Semi Structured Interviews
Qualitative	Uganda	epilepsy (10), Caregivers (7)
Caregivers	Hospitals
Community	years
0-17 years	themes emerged in the qualitative analysis related to self-management behavioral dilemmas, and 11 themes emerged for support requirements. The findings from the qualitative and quantitative analyses were combined to create a conceptual model based on the SMART framework and the social cognitive theory.
Findings: Many	
	Amos Deogratius Mwaka, Bernard Toliva Opar and Richard Idro	of the outcomes of care and treatment for children with epilepsy and adolescents with nodding syndrome and other epilepsies in Uganda		Method: direct observations and interviews (Clinical Audit)					affected children had suboptimal NS management resulting in poor seizure control and complications including severe burns. Root causes of these outcomes were frequent antiepileptic drugs stock outs, migration of health workers from their work stations and psychosocial issues. There was hardly any specialized multidisciplinary team (MDT) to provide for the	

Study ID	Author(s)	Title	Year	Study Design	Country	Participant Count and Type	Recruitment Setting	Age Range	Summary of findings	
complex rehabilitation needs of the patients and a task shifting model with inadequate support supervision was employed, leading to loss of skills learnt.
Reported psychosocial and psychosexual issues associated with NS included early pregnancies, public display of sexual behaviours and child abuse.
10	Julie A. Carter,	The reasons for the	2012	Qualitative:	Kenya	children with	Community	14-18years	Barriers: 1) lack of	
	Catherine S.
Molyneux, Caroline K. Mbuba, Jo Jenkins, Charles R.J.C. Newton, Sally D. Hartley	epilepsy treatment gap in Kilifi, Kenya: Using formative research to identify interventions to improve adherence to antiepileptic drugs		Focus group and Interview		epilepsy (6), Caregivers, Adults with epilepsy			knowledge about the causes, treatment and prognosis of epilepsy; 2) inaccessibility to antiepileptic drugs;
3) misconceptions about epilepsy derived from superstitions about its origin; 4) and dissatisfaction with the communication skills of health providers.
Interventions: 1) education and support for PWE and their caregivers; 2) communication skills training for health providers; 3) and improved drug provision.	
11	Judith Chew, John Carpenter, Anne M. Haase	Living with epilepsy in adolescence—A qualitative study of young people’s experiences in Singapore: Peer socialization, autonomy, and selfesteem	2019	Qualitative Method: Semistructured interviews	Singapore	children with epilepsy (15)	Tertiary Hospital	13-16 years	Barriers: social and environmental factors. Enablers: support from both family and friends	
12	Amos Deogratius Mwaka, Elialilia S. Okello, Catherine Abbo, Francis Okot Odwong, Willy Olango, John Wilson Etolu, Rachel Oriyabuzu, David Kitara Lagoro5, Byamah Brian Mutamba, Richard Idro, Bernard Toliva Opar, Jane Ruth Aceng, Assuman Lukwago and Stella Neema	Is the glass half full or half empty? A qualitative exploration on treatment practices and perceived barriers to biomedical care for patients with nodding syndrome in postconflict northern Uganda	2015	Qualitative: Focus Group, interviews	Uganda	Caregivers, Community members (61)	Community	NS	Barriers: (1) health system factors e.g. long distances to facilities, frequent unavailability of medicines, few healthcare providers, and long waiting times; (2) contextual and societal challenges e.g. lack of money for transport and medical bills, overburdening nature of the illness that does not allow time for other	
activities, and practical difficulties
involved in transporting the physically deformed
and mentally
(continued on next page)

Study ID	Author(s)	Title	Year	Study Design	Country	Participant Count and Type	Recruitment Setting	Age Range	Summary of findings	
									retarded children with epilepsy to the health facilities.	
13	Debopam	A qualitative study of	2022	Qualitative:	USA	Caregivers	Tertiary	7-17 years	Barriers: children	
	Samanta, Vimala	epilepsy self-		semi-structured		(11), children	Hospital		with epilepsy and	
	Elumalai, Megan Leigh Hoyt, Avani	management barriers and facilitators in Black		in-depth interviews		with epilepsy (11)			caregivers' limited understanding and	
	C. Modi, Martha Sajatovic	children with epilepsy and caregivers in Arkansas							retention of complex written and spoken information and variable training and confidence in seizure first-aid, mistrust of the health care system, lack of defined processes to adopt healthy behaviors and challenges with disclosing epilepsy Facilitators: encouraging access to epilepsy selfmanagement, collaborative approach and innovative strategies, building a team around the child	
14	Ann Lewis and Sarah Parsons	Understanding of epilepsy by children with epilepsy and young people with epilepsy	2008	Mixed Method: esurvey and interviews	UK	children with epilepsy (22)	Charities	6-17 years	Barriers: stigma in the school context	
15	Ya-Ping Chiu, Tzu-	Adjusting to a seizure-	2014	Qualitative:	Taiwan	children with	Tertiary	14-17	Findings: setting the	
	Ying Lee, Kuang- Lin, Virginia L. Laadt	free "newnormal" life following discontinuation of antiepileptic drugs		interviews		epilepsy (11)	Hospital	years	body and mind free;
2) engaging in selfregulation; and 3) protection by	
		during adolescence							significant others.	
16	Jeni Harden,	children with epilepsy's	2021	Qualitative:	UK	children with	Secondary	8-14 years	Findings: children	
	Rebecca Black,	understanding of		Interviews and		epilepsy(23)	and Tertiary		with epilepsy spoke	
	Martyn Pickersgill, Jay Shetty, Ailsa McLellan, Celia Brand, Michelle Small, Jane McDonnell, Lorna Clarke, Richard F. Chin	epilepsy: A qualitative study		Observation			Hospitals		about what epilepsy meant by describing the physical sensations of having a seizure or through the act of taking medication, children with epilepsy described the role they had, or felt they should have, but reported challenges in being meaningfully involved in clinical appointments. While healthcare professionals were initial information nodes, epilepsy information from parents appeared to be more significant for children with	
									epilepsy.	
17	Pernilla Garmy	Adolescents’ Lived	2003	Qualitative:	Canada	children with	Tertiary	13-19	Barriers: Side effects	
	Eklund, Bengt Sivberg	Experience of Epilepsy		Interviews		epilepsy (49)	Hospital	years	of medications, feeling of being	
different.
Facilitators: finding support, being in
(continued on next page)

side effects on their children [34]. Concerns were raised regarding uncertainty about how the medication works and its long-term effects on their child’s health [34].
4.1.2.		Trust in medication (Enabler)
Conversely, many children, parents and caregivers recognized the importance of ASMs in improving seizure control and hence saw this as a reason for adherence [28-31,36,39,40,42,45,46]. Participants expressed positive change after adhering to ASMs.
Heather said, "I can't do anything about the seizures unless I take my medicine. If I'm late taking my medicine, or don’t take it, or miss it, I’ll have a lot of seizures." ([36], p.134).

4.1.3.		Suitable taste of medication (Enabler)
In relation to the taste of medication, some children had no issues with the taste of the medication and described the taste as neutral [31].
4.1.4.		Challenges with taste of medication (Barrier)
Most children in the studies expressed their displeasure on the taste of ASMs especially liquid formulations [30,31,35,36,39]. They described the taste as "nasty" [36] and “weird" [30] making it difficult to take their medication as prescribed.
“When I take them they're like an orangey taste but they re not like orange juice or orange, they're like a horrible orange.” (F, 7) ([35], p. 186).

Table 4 (continued)
Study ID	Author(s)	Title	Year	Study Design	Country	Participant Count and
Type	Recruitment Setting	Age Range	Summary of findings	
									control and experimenting	
18	M. J. McEwan, Colin A. Espie, Julie Metcalfe, Martin J. Brodie & Margaret T. Wilson	Caregivers of school children with epilepsy with epilepsy: findings of a phenomenological study	2011	Qualitative: Interviews	Canada	Caregivers (7)	Tertiary
Hospital	5-12 years	Findings: (a) issues related to adolescent development (identity formation) and (b) epilepsy related variables, with five and four main sub-themes, respectively (‘peer acceptance’, ‘development of autonomy’, ‘school related issues', ‘epilepsy as part of me’ and ‘future’, and ‘medication issues’, ‘seizures’, ‘knowledge of epilepsy’ and ‘sense of uncertainty’).	
19	Susan Hightower,	A Qualitative	2002	Qualitative:	USA	children with	Tertiary	9-12 years	Findings: These	
	Myra Carmon, & Ptlene Minick	Descriptive Study of the Lived Experiences of School-aged children with epilepsy with Epilepsy		Interviews		epilepsy (8)	Hospital		findings suggest that children with epilepsy with epilepsy dislike having seizures and taking seizure medication; friends provide significant relationships and support; children with epilepsy with epilepsy participate in sports; and children with epilepsy with epilepsy are cognizant of auras and ways to prevent	
									seizures.	
20	Jung Chen, Yueh-	Lived experience of	2009	Qualitative:	Taiwan	children with	Tertiary	7-12 years	Findings: The first	
	Chih Chen, Hui- Chuan Yang and Ching-Shiang Chi	epilepsy from the perspective of children with epilepsy in Taiwan		Interviews		epilepsy (15)	Hospital		theme, ‘living with epilepsy’, had two subthemes: disease- related experiences and school-related issues. The second theme, ‘coping with epilepsy’, had two subthemes: developing strategies to manage or reduce seizures and seeking support from family members.	

Table 5
Summary of Meta-ethnography results.	Table 5 (continued)	
	Theme 1: Medication Related Issues	
Theme 1: Medication Related Issues			Synthesised	Sub-themes	Second order	First Order	
							
Synthesised	Sub-themes	Second order	First Order	themes (Third	constructs: the	Constructs:	
themes (Third		constructs: the	Constructs:	order	authors	examples direct	
order		authors	examples direct	construct)	interpretations of	quotes from the	
construct)		interpretations of the original	quotes from the participants of the		the original findings	participants of the study.	
		findings	study.	Barriers			
Medication Related Issues	Enablers			Mistrust in Medication	Perception of PME	“Maybe they could suggest another one (medication) which	
	Trust in Medication
Suitable taste of medication
Regimen and taken habits
Easy to swallow	Impact of epilepsy on children
Self-management.
Treatment as a saviour
Size, texture, and taste of medication
Treatment as a symbol of difference
Being in Control
Size, texture, and taste of medication	Before he was diagnosed with epilepsy, he did very badly in school...We thought he was a slow learner. Until he was diagnosed with epilepsy and started taking medications, he became better in learning... I think the medications helped him concentrate better. [44 years old, with a 17-year-old son with epilepsy] ([28], pp. 273) ‘Don‘t do exercises that are too exciting; play other games ... you need to take pills to prevent continuous seizures ([29], pp. 1419).
I think there was one point where I was first getting onto the medicine two years ago and my dad sent me a text like just as I was coming out of school and said ‘you forgot to take your medicine’. I was surprised I survived the day ([30], pp. 195).
“they taste of nothingness" (P18) ([31], pp.6).
It is easy because you can just put a couple in your bag or, you know, if she’s [Lydia’s] going to a friend’s she can do it quite discreetly. She hasn’t got to [measure out the liquid medication in a syringe], you know, so it’s quite good (Mother, [32], pp. 7).
I take my medication without thinking. That has been a habit. I carry it with me in my daily life.
-Interview 7, Female, 17 years. ([33], pp. 46).
“They’re super small and ok to take" (P16) ([31], pp.6).	Challenges with taste of medication
Negative associations with medication
Restrictions of activities	Need for healing
Antiepileptic medication
Epilepsy-related issues
My seizure medications.
Negative feelings about epilepsy.
Developmental
issues
My seizure medications.
Epilepsy related issues	she can respond to, depending on her genetic make-up" (Joe) ([34], pp. 4). “Ey! This treatment she is taking, we don’t really see the difference. We can’t see its effect because sometimes soon after taking the treatment, she gets sick at the same time, you see? It makes us wonder what the medication is for and how it works, we don’t even know! My worry is that the medication they are giving her might end up damaging her brain because we don’t see where it’s working.” (Joe) ([34], pp. 4). “When I take them they’re like an orangey taste but they’re not like orange juice or orange, they’re like a horrible orange.” (F, 7) ([35], pp. 186). “They taste awful, sometimes when I’m drinking it falls in my cup and then the milk that I’m drinking tastes horrible.” (M, 10) ([35], pp. 185).
"it tastes nasty ([36], pp. 134).
‘Taking drugs is so much trouble; I feel so tired' ([29], pp. 1418).
“I would change nothing except I wouldn’t have to take tablets." (F, 10) ([35], pp. 184) "wouldn’t like to have it (epilepsy) because I don’t like to take all that medicine. I get tired of the medicine." ([36], pp. 134).
"or like they’re up in my room and I’m downstairs watching TV and i just can’t be bothered going up to get them" (F, 17) ([37], pp. 23).
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Table 5 (continued)			Table 5 (continued)			
Theme 1: Medication Related Issues			Theme 1: Medication Related Issues			
Synthesised	Sub-themes	Second order	First Order	Synthesised	Sub-themes	Second order	First Order	
themes (Third	constructs: the	Constructs:	themes (Third		constructs: the	Constructs:	
order	authors	examples direct	order		authors	examples direct	
construct)	interpretations of the original findings	quotes from the participants of the study.	construct)		interpretations of the original findings	quotes from the participants of the study.	
	Management of epilepsy care	I do not like being epileptic. I have to take medications... I can’t go out with friends... I can’t imagine my life in the future. [15-year- old teenage girl with epilepsy] ([28], pp. 272).			Compliance	Otherwise, no one will ask me to play football together, and I can’t accept that I have fewer friends.” (AWE 7) ([40], pp. 7).
“when I first found out I had it, I’d just take the tablet	
	Untying the restraints of medical treatment	"You felt trapped by the medications. When I camped overnight, I had to take them. It was troublesome when you stayed outside.... Now I feel free!”				because my mum was being dead worried about me all the time, but then I didn’t like having it, I felt different from everybody else” (F, 14) ([37], pp. 23).	
		([38], pp. 56).		Cost of	Increasing	“The hospital is good	
Difficulty to	Purpose of	“they are big and		medication	accessibility to	but sometimes you go	
swallow	medication
Antiepileptic medication	horrible. I can choke” (Ρ17) ([31], pp.6). “Swallowing tablets at the start... I found it dead hard, I went through about eight tablets a day before I could get the hang of it.” (F, 12) f[35], 186).			AEDs	there, you are examined and drugs are prescribed but you need money for those drugs. So if you don’t have the money, then you just remain with the illness.” (FGD CHWs) ([41], pp. 618).	
		“Sometimes they get stuck and I have to take more juice, they taste awful, I actually bring some of them up.” (F, 9) ([35],	Theme 2: Knowledge of Epilepsy and ASMs
Synthesised themes	Sub-themes	Second order constructs: the	First Order Constructs:	
Adverse effects of medications	Difficulty with symptom management
Medication and tiredness
My seizure medications.	186).
“Once upon a time, he had a skin rash and left it alone. Then, he had blisters and infections. The doctor said it was drug dermatitis.” (FC 7)
“I forget things quick” ([39], pp. 325)
One time this (neurologist) put me on one or two Zarontin (ethosuximide) up. I felt really bad. Then she cut me down and my eyes were popping out.” ([36], pp. 134).	(Third order construct)
Knowledge of epilepsy and antiseizure medication	Enabler
Good knowledge of antiseizure medication	authors interpretations of the original findings
Treatment as prevention	examples direct quotes from the participants of the study.
He [Isaac] doesn’t do it now, but only up until very recently he’s had this idea that once he stops having fits and everything’s running smoothly that he doesn’t actually need his medication anymore. And he's only just started to get the idea that it’s the medication that stops the fitting ([30], pp. 193).	
Stigma	Epilepsy-related issues
Behavioural dilemmas caused by objective factors	“I felt quite embarrassed because I had to take my tablets one night, my friends were like, ‘how many did you have to take?’” (F, 9) "I dare not take medicine in front of my friends.		Barrier
Limited Knowledge of antiseizure medication	Concern about psychological/ emotional functioning	‘He doesn’t understand that he is sick. He asks, why do you take me to clinic every month? Should I always take these tablets? He’s small you Know so we quickly change the topic, we shouldn’t
(continued on next page)	

Table 5 (continued)			Table 5 (continued)			
Theme 1: Medication Related Issues			Theme 1: Medication Related Issues			
Synthesised	Sub-themes	Second order	First Order	Synthesised	Sub-themes	Second order	First Order	
themes (Third		constructs: the	Constructs:	themes (Third	constructs: the	Constructs:	
order		authors	examples direct	order	authors	examples direct	
construct)		interpretations of the original findings	quotes from the participants of the study.	construct)	interpretations of the original findings	quotes from the participants of the study.	
		The issue of cure
Difficulty with symptom management	hurt his mind. We also do that when others inquire about him when he’s around’ (mother of 7- year-old boy) ([42], pp. 8).
“When they take drugs, instead of getting better then it comes back again, what we want is that they take the drugs - no matter for how long - but when they finish them, the illness is gone.” (Interview father) ([41], pp. 618).
“I’ve had a lot of trouble concentrating in class lately, and I didn’t know whether it was a result of changing my medication.” “I was worried about having a seizure outside, and no one could help me.” (AWE 2) ([40], pp. 4)		Health system related challenges	the healthcare workers come and assess the children and give them the drugs, ...Now we have the medicines from here so there is no problem”, (Ρ30: IDI, Caregiver; Akwang) ([43], pp. 7)
“There is no discrimination; if you go there you will get the medicine like the other people who are sick and when the child is so badly off then the VHTs call them (healthcare professionals) from town and they come with the vehicle and they take the child there. Like my daughter some time ago she was really ill so I went to the VHT and we called them then they came and collected us from	
Theme 3: Healthcare Provider						here and we went to town where I nursed her for about two	
Related						months”, (P34: IDI,	
Issues						Caregiver; Akwang)	
Synthesised	Sub-themes	Second order	First Order			([43], pp. 7)	
themes		constructs: the	Constructs:	Barrier			
(Third order		authors	examples direct	Poor	Unmet needs	The doctor always	
construct)	Enabler	interpretations of the original findings	quotes from the participants of the study.	communication by healthcare providers		tells me to be at ease about the side effect of antiepileptic medications! ...the	
Healthcare	Mobile	PME and mHealth	“But because of my			doctor should be	
Provider	Technology	devices	age, I sometimes			frank. I know that	
Related
Issues			forget to give medication, I found the phone very helpful in that aspect. It was reminding me when it was time for meds.. . So, I realised it was			all medications have side effects. But no one told me what the side effect of Epilim is... [38 years old, with an 8- year-old son of epilepsy] ([28], pp. 272).	
	Equity to healthcare	Long distances to the health facilities	helpful to receive reminders as it made me give the meds promptly. It does encourage or motivate us to give the pills” (Bongi) ([34], pp. 4) “There is that big mango tree... that is where we normally meet every after two weeks; that is where		Poor doctor-patient relationships and communication	When the drugs had finished, I didn’t understand the doctor, whether I was to go back when the drugs were over. When I went the other day, he asked me why I hadn’t gone for more drugs so I told him that I didn't understand him on the first	

Table 5 (continued)			Table 5 (continued)			
Theme 1: Medication Related Issues			Theme 1: Medication Related Issues			
Synthesised	Sub-themes	Second order	First Order	Synthesised	Sub-themes	Second order	First Order	
themes (Third	constructs: the	Constructs:	themes (Third	constructs: the	Constructs:	
order	authors	examples direct	order	authors	examples direct	
construct)	interpretations of the original findings	quotes from the participants of the study.	construct)	interpretations of the original findings	quotes from the participants of the study.	
Skills of healthcare providers	Inadequate staffing	day.” (Interview mother) ([41], pp. 619).
“I brought my child and was taking him down from my back as the doctor was asking what was wrong. He said he didn’t need to see the child and just prescribed drugs. I took the prescription and tore it in two pieces then went to see another doctor and my child was admitted to hospital.” (Participatory workshop, parents/ grandparents) ([41], pp. 619). There are some problems because what I have seen is that there were some health workers that were recruited	Supply of medication	Suboptimal seizure management
Suboptimal seizure management	Sometimes you go there and they tell you the drugs are not there so you have to go and buy from the drug shops (A female caregiver. Health Facility 3) ([44], pp. 4) The problem is that sometimes even when you want to give the child the drugs like it is prescribed, you will go to the health facility and they tell you that the drugs are not there which creates a gap in the treatment of the children so what I think is that the drugs should be made available at the facility all the time (A female caregiver, Health Facility 4) ([44], pp. 4).	
		as a response to this disease and they are not well-trained health workers so I see as ifthe way they respond to the patients who go to the health center to get the medicines is not good. Some people actually feel so disgusted and		Need for healing	“When I come to hospital, and they tell me I can’t get the medication... they will give me for 5 days and expect me to come back for more after 5 days... You are getting hard time to collect meds!” (Ivy) ([34], pp. 4)	
	Health system related challenges	they leave the health facility without getting the medicines (A female caregiver, Health Facility 4) ([44], pp.4)
“The issue of healthcare workers being rude to the patients is there; sometimes you go there and may be because they are tired they will tell you enough of those insults, but because you are the mother of the child who is sick you just keep quiet and pray that they give you the drugs and you go back home”, (P22: IDI, Caregiver; Atanga) ([43], pp. 7).	Long waiting times
Long distance to healthcare facilities	Congestions and long waiting times
Diminished access to and utilization of biomedical health services	“Then the third problem is that sometimes there are so many people in the health facility so you find that when we come in the morning you will go back home in the evening; sometimes the children are so hungry and they start getting the attacks there in the line”, (P27: IDI, Caregiver; Akwang) ([43], pp. 9).
“You have to make sure that you get bus fare before the drugs are finished but if you pass two weeks without drugs because you don’t have the fare, then he fits so seriously.” (FGD	

Table 5 (continued)
Theme 1: Medication Related Issues
Synthesised themes (Third order construct)	Sub-themes	Second order constructs: the authors interpretations of the original findings	First Order Constructs: examples direct quotes from the participants of the study.	
Theme 4: Family Related Issues		Diminished access to and utilization of biomedical health services
Managing healthcare needs	grandmothers) ([41], pp. 618).
“I want to say that taking a child to [the hospital], it takes a long time. If you could bring the drugs here, people would save time and bus fare.” (FGD CHWs) ([41], pp. 618).
“1 stay very far. I take three taxis to get here., .and sometimes I am needed here three times a month, I can’t manage that and work” (Fortunate) ([34], PP· 4)	
Synthesised	Sub-themes	Second order	First Order	
themes		constructs: the	Constructs:	
(Third order		authors	examples direct	
construct)
Family Related Issues	Enabler	interpretations of the original findings	quotes from the participants of the study.	
	Support system
Barriers	Experiences during a child’s first seizure
Teachers’ reactions
Taking medicine	My mother said that I was sick and I have to eat (take) medications. The doctor said two years later I will be fine. [8-year-old boy with epilepsy] ([28], pp. 270).
My teacher knew ... about my situation. She asked me if I had taken medications ([29], pp. 1418).
Τ could take the drugs by myself, but sometimes my mum needs to remind me. Sometimes, I ask my mum if I could take 1.8 ml of the medicine’
[the child needed to take 2 ml Deparkine, but she negotiated with her mother to decrease the dosage] ([29], pp. 1419).	
	Forgetfulness	Epilepsy-related issues	“If I’m going to school with	
someone and my
Table 5 (continued)
Theme 1: Medication Related Issues	
Synthesised themes (Third order construct)	Sub-themes	Second order constructs: the authors interpretations of the original findings	First Order Constructs: examples direct quotes from the participants of the study.	
		Compliance
Managing healthcare need	mum’s gone out and she’s forgot to give the person my tablets, that’s when I’d get worried.” (F, 8) ([35], pp. 185). “It’s like trying to remember all the time because my dad will ask if I’ve taken my pills and I’m like ‘no’ and he says you have to take it. One time I forgot and he forgot and the third night I took a fit” (F, 12) ([37], pp. 23).
“Yes, sometimes I do forget to give him.. .” (June) ([34], pp. 2)	
	Family preference	Knowledge of available services
Intrahousehold decision making	The father refused the mom to take the child to hospital because if he’s injected and he has the charms he’ll die. [CHW, FGD] ([45], pp. 208).	
	Burden	Adherence	“I have to force her to open her mouth to take the pills because she doesn’t want, and only me is able to give her the pills successfully, no one else can” (Fortunate) ([34], pp. 2).	

Surprisingly, a child found it confusing that while sugar was discouraged for health reasons, they were required to take sugar coated epilepsy medication and questioned the health implication of the medication [39].
4.1.5.		Regimen and taken habits (Enabler)
For younger children, parents frequently adapted medication regimen to fit their children's daily activities and help them adhere to their medication. Most parents also adjusted the timing of medication administration to minimize the impact of the side effects on daily activities. For example, parents would give ASMs early in the morning to reduce drowsiness during school times [32]. Parents who linked having a medication schedule with daily activities found this improved adherence. Teenagers who are independently taking their medication established a habitual routine strategy to support their medication update. They also incorporated their medication regimen into their daily routines [33].
Also, convenient medication formulation also played an important role in ASMs adherence. For instance, one parent described the advantages of granule- form ASMs for their child, highlighting how they made administration more discreet and convenient especially outside their home;
"It is easy because you can just put a couple in your bag or, you know, if she's [Lydia’s] going to a friend’s she can do it quite discreetly. She hasn’t got to [measure out the liquid medication in a syringe]..." ([32], p.7).
4.1.6.		Easy to swallow (Enablers)
A smaller medication size was accepted by children as they expressed that, it was easy to swallow [31]. This was identified as an enabler to medication adherence explaining the need to consider the size of medication in children.
“They're super small and ok to take" (P16) ([31], p.6).
4.1.7.		Difficulty to swallow (Barrier)
Swallowing difficulties emerged as a significant barrier to medication adherence among children taking ASMs [30,31,35]. Children described their tablets are "big" and "horrible" to swallow which resulted in avoidance of the medication [31]. Other children had to practice persistently before they could manage them effectively:
“Swallowing tablets at the start ... I found it dead hard, I went through about eight tablets a day before I could get the hang of it." (F, 12) ([35], 186).
4.1.8.		Negative associations with medication (Barrier)
Many of the participants in the selected studies expressed feelings of frustration and fatigue due to the long period of taking ASMs [35-37]. Some found taking medication tiresome and described the constant need to take medication as a source of distress [29]. For others, medication was not only tiring but also seen as a reminder of their illness, making them feel frustrated [46]. Resistance among children taking ASMs also stemmed from the need to continuously change of ASMs due to side effects or inefficacy.
“...The more times I have to change it the more tired I am, because when you start a new pill you re tired at the start of it" (F, 14) ([37], p. 23).
4.1.9.		Restrictions of activities (Barrier)
Teenagers and parents frequently expressed how medication regimens-imposed restrictions to daily activities affecting social life, routines and autonomy [32,37]. Rigid dosing schedules was also identified as a reason why some children are not able to adhere to ASM for instance, medication requiring to be taken on an empty stomach created issues around meal times and school routines [38]. Again, a child who is free from epilepsy explained that ASMs created a sense of entrapment making overnight stays or travel troublesome [28,38].
4.1.10.		Adverse effects of medication (Barrier)
Adverse effects of ASMs were a major concern for children, parents and caregivers which influences the medication adherence and overall well-being. Side effects reported includes tiredness, memory impairment, weight gain, emotional disturbances and physical discomfort [30, 31,33,36,39,40,44]. Children reported ASMs had cognitive and emotional effects on their health [39]. Some also expressed that ASMs affected their mood, aggression and emotional distress [42]. Others expressed dizziness, nausea, hair loss, excessive drowsiness [28,34,38, 42]. Parents and carers were also concerned about the potential long-term effects of polypharmacy and foetal development.
“I was taking Levetiracetam (a medicine), but sometimes I got dizzy. I was not sure if it was a result of the medication or the disease, so I had to stop the medication.” (AWE 6) ([40], p. 4).
4.1.11.		Stigma (Barrier)
Stigma surrounding epilepsy and ASMs use emerged as an essential concern among children in high income countries. Many of them described feelings of shame, secrecy, and fear of judgement, which influenced their willingness to take medications openly [30,35,37,40]. Some adolescents take their medication secretly to avoid being perceived differently by the friends [40]. This was also highlighted by caregivers as children were unwilling to take their ASMs in public due to social exclusion [30].
4.1.12.		Cost of medication (Barrier)
Financial burden was a major concern for many families managing childhood epilepsy. The high cost of ASMs, particularly when purchased outside of hospital pharmacies often led to treatment interruptions and non-adherence [41,42]. This concern was associated with countries without free healthcare mostly Low- and middle-income countries (LMIC) such as Sri Lanka, South Africa and Kenya and was not a concern for countries with access to free healthcare.
4.2.		Knowledge of epilepsy and anti-seizure medication (ASMs)
4.2.1.		Good knowledge of ASMs (Enabler)
Children’s understanding of the role and necessity of ASMs varied across studies. Some children initially struggled to recognize the importance of continued ASMs adherence but gained the clear understanding over time helping them to continue the medication [30]. Some children understood their medication and expressed pride in taking their medication [30].
4.2.2.		Limited knowledge of ASMs (Barrier)
Many children, parents and caregivers demonstrated limited knowledge and misconceptions about the role and effects of ASMs [28, 32,39-41,44]. The lack of understanding of ASMs contributed to confusion about epilepsy treatment [46]. Some children found it difficult to understand why they have to take medication consistently especially when they have been free of seizure for long periods [30,42, 43]. Some children feared of becoming addicted to their ASMs [36]. Some participants also believed that taking ASMs when child is not fitting causes epilepsy and hence there is no reason to take ASMs if the child has not had any seizure episode [41]. Furthermore, lack of clear information about ASMs, dosages, and administration schedules results in confusion and incorrect medication practices [40]. Also, some caregivers and parents expected ASMs to provide a permanent cure leading to frustration and doubts when the seizures persisted despite treatment [43].
“When not fitting the person is very fine and like if someone is not asthmatic and you give anti-asthma drugs, they get it so it's the same to the epileptic person, if you give epileptic drugs, he will get epilepsy." (Interview diviner) ([41], p. 618).
4.3.		Healthcare providers related issues
4.3.1.		Mobile technology (Enabler)
The use of mobile technology was a key enabler in supporting adherence to ASMs among CWE. Medication reminders via mobile phones were particularly important for caregivers, helping to reduce forgetfulness and ensure timely administration of ASMs. For instance, caregivers described how phone alarms and reminder apps provider structure to their medication routines [34]. In some instances, participants have expressed utilization of a pharmacy app on their phone and also enrolled in automatic prescription refills which minimized the risk of running out of medication [32]. These mobile health tools allow caregivers to promptly address concerns about prescriptions and treatment. Others used alternative methods such as phone reminders to manage medication regimens [32].
4.3.2.		Equity to healthcare (Enabler)
Parents and caregivers valued healthcare providers’ efforts to bridge access gaps by delivering medicines to their communities using vehicles. They also highlighted that these community hubs, where ASMs are collected for their children, are free from discrimination [43].
"There is no discrimination; if you go there you will get the medicine like the other people who are sick 	"	([43], pp. 7)
4.3.3.		Long waiting times (Barrier)
Caregivers expressed frustration in waiting in long queues before been seen [43]. The long hours spent at hospitals before getting children’s medication goes a long way to affect adherence.
4.3.4.		Poor communication by healthcare providers (Barrier)
Unclear communication between parents, caregivers and healthcare providers was highlighted as a barrier to ASM adherence. Participants expressed dissatisfaction over unclear medication instructions, inadequate explanations of side effects and rushed consultations which contributed to mistrust of ASMs [41]. Some parents and caregivers expressed that healthcare providers especially doctors were not transparent enough on the side effects of medications and hence left them unprepared to manage potential side effects [28]. Others expressed that the contraindications on the drugs were unclearly explained.
"...the doctor should be frank. I know that all medications have side effects. But no one told me what the side effect of Epilim is... [38 years old, with an 8-year-old son of epilepsy" ([28], p. 272).
4.3.5.		Skills of healthcare providers (Barrier)
Caregivers identified that healthcare providers did not have adequate skills in managing CWE which was a critical factor impacting ASM adherence for CWE [32,44]. Factors such as training competency and provider attitude were identified as impacting access to treatment and effective administration of treatment [43].
4.3.6.		Supply of medication (Barrier)
The unavailability and inconsistent supply of ASMs at healthcare facilities emerged as an issue of concern [34,41,43,44]. Caregivers expressed frustration at medication shortages periods of limited supply [44].
4.3.7.		Long distance to healthcare facilities (Barrier)
Access to healthcare facilities was a major factor identified as a barrier to ASM adherence. Most caregivers and parents expressed inability to visit healthcare facilities for children ASM medication due to distance [34,41,45]. All studies which highlighted this factor recruited participants from LMICs. Caregivers who were unable to visit healthcare facilities as expected were often unable to obtain medications for their children.
"You have to make sure that you get bus fare before the drugs are finished but if you pass two weeks without drugs because you don’t have the fare, then he fits so seriously." (FGD grandmothers) ([41], p. 618).
4.4.		Family related issues
4.4.1.		Support system (Enabler)
Parents and siblings were identified as a major influence on medication adherence. Children expressed that their parents remind them to take their medication [28-30,32,33,37,40,46,47]. Parental support was seen as an effective tool to facilitate medication adherence among CWE. Teachers were also identified to support children to take their medication to school where parents were not present.
"My teacher knew ... about my situation. She asked me if I had taken medications" ([29], p. 1418).
4.4.2.		Forgetfulness (Barrier)
Forgetfulness emerged as a barrier to medication adherence. Children expressed that they sometimes forget to take their medication which results to them missing their dose [32]. Parents who were seen as a supporting factor expressed that, they also forget to buy or remind children to take their medication [34,35,37,42].
4.4.3.		Family preference and cost of care (Barrier)
Family beliefs and financial constraints influenced decisions regarding epilepsy treatment, often impacting adherence to ASMs. In some cases, cultural beliefs led to refusal of treatment as a father did not permit a child to receive western medication [45].
4.4.4.		Burden (Barrier)
Children who refused to take their medication became a burden for their caregivers as they have to spend more time to support them to take their medication. Caregivers expressed frustration in forcing these children to have their medication [34]. Polypharmacy emerged as a barrier to medication adherence as there were no adequate support for caregivers to give ASMs to children.
“Adherence was more challenging when the child needed multiple medications because primary caregivers received inadequate support from the children or other family members" (2nd Order Construct) ([32], p. 7).
5.		Discussion
This qualitative synthesis has shown that the main reasons for medication non-adherence in children are either medicine, knowledge, family or healthcare professional related. This qualitative analysis provides insight into a previous meta-analysis which shows the number of medicines (polypharmacy) as a predictor of non-adherence [10]. It is evident that number of medicines is likely to be proxy for increased likelihood of inappropriate formulation, unpleasant flavour, complicated regimen and likelihood of adverse events. This suggests that the solution may be careful individualisation of therapy beyond selection of the chemical treatment itself.
The main findings of our study are that children expressed mixed responses to the taste of ASMs, with some rejecting medication due to unpleasant flavours, while others had no concern. This aligns with previous research showing that taste influences adherence [48,49]. As unpleasant taste might lead to non-adherence in children, prescribers should therefore consider individual taste preferences where possible. For instance, if a child prefers strawberry favour, prescribing a formulation with their preference may enhance adherence. Interestingly, even where some flavours were used, they did not result in a palatable final product.
Beyond taste concerns, swallowing difficulties particularly in younger children, impact on medication adherence. The size and shape of ASMs played a role, as younger children under 12 years old struggled with larger tablets due to smaller oral cavities [50]. Interestingly and perhaps unsurprisingly, teenagers did not report similar concerns, suggesting that this is an age-dependent challenge. This reinforces the need for prescribers to consider formulations, such as mini-tablets or granules, where available to provide a better alternative in younger children.
Some children and carers report refusing to take ASMs due to concerns regarding potential side effects or actual experience of them. A quantitative relationship between side effects and treatment adherence in adolescents has been reported [51]. To address this, healthcare providers should clearly communicate potential side effects to children and their families to allay concerns and enable side effects to be identified in a timely manner. Additionally, regular monitoring and dose adjustments should be considered to minimize adverse effects and enhance adherence [52].
Children, parents, and caregivers’ beliefs about ASMs significantly influenced adherence, with confidence in the medication and doubt being positively and negatively related. This aligns with a crosssectional study showing a positive association between trust in medication and adherence [53]. It is therefore imperative for healthcare providers to actively engage with children and their parents or caregivers to address concerns about medication and where appropriate provide information which improves beliefs about them.
Researchers have previously shown that provider-patient communication is a key tool which can to improve adherence (Zolnierek and Dimatteo, 2009). Children, parents and caregivers demonstrated varying levels of knowledge regarding epilepsy and ASMs. While some children had a good understanding of the role of medication in seizure control, others lacked awareness of its importance. Caregivers also held misconceptions, expecting ASMs to cure epilepsy or questioning their use if seizures stopped. Many caregivers and children expressed concerns about the long-term effects of ASMs. Concerns about long-term effects, including potential impacts on brain function, addiction, and unknown side effects, contributed to confusion and frustration, ultimately leading to non-adherence. The impact of socio-educational status and adherence was not identified in this study hence it is important for future research to address this to ensure services/toolkits aim to support adherence are accessible to hard to reach, vulnerable and seldom heard from groups. Again, healthcare professionals prescribing ASMs for children should therefore routinely provide information regarding longterm safety to reassure parents and children and prevent non-adherence.
Parents used mobile health (mHealth) technologies as reminders to administer ASMs to their children finding them essential for maintaining adherence. Research supports the role of mHealth tools in improving medication adherence [54]. However, access to these technologies is limited in low- and middle-income countries (LMICs) due to technological constraints (Kruse et al., 2019). Additionally, some parents and caregivers lack the skills to use these tools, further impacting adherence (Jacob et al., 2022). Providing ongoing education on mHealth strategies to those who find them useful could enhance adherence to ASMs.
The distance to healthcare facilities was a significant burden to many families. Parents and caregivers found it difficult in accessing care and obtaining new prescriptions when medication runs out. This issue was particularly pronounced among participants from LMICs, preventing them from attending hospital appointments as needed. Long distance to hospital has been associated with non-adherence to treatment [55]. The introduction of electronic prescriptions and postal delivery of medicines in these areas may be useful.
Poor communication between children, parents, caregivers and healthcare providers also negatively affects adherence. Many participants reported that healthcare providers did not have time for patients during consultation, leaving families with limited information. As a result, some sought information online instead. A quantitative study by [9] found that poor communication impacted medication adherence, with parents and caregivers who experienced smooth and friendly interactions with hospital staff being more than six times more likely to adhere to their ASMs.
Medication shortages were another major concern. Parents and caregivers expressed frustration when ASMs were unavailable at healthcare facilities or pharmacies. Previous research has highlighted similar issues, where specific formulations or brands prescribed by healthcare providers were not consistently stocked [56,57]. This is concerning especially for CWE, change of formulation or brand may affects the quality of health as switching between brands or formulations can lead to variations in the amount of active ingredients reaching the brain. Low levels of the active ingredient may result in poor seizure control while high levels may cause side effects [58]. Even slight changes in bioavailability of ASMs can negatively impact seizure management (Kesselheim et al., 2010; Kwan and Palmini, 2017). Ensuring the consistency availability of ASMs in pharmacies and healthcare facilities is essential in improving adherence.
The majority of young children relied on their parents and siblings to remind them to take their medication. Parental support was seen as an essential facilitator of adherence, with structured routines and active involvement helping to mitigate forgetfulness and resistance to medication. Beyond parental influence, teachers were also identified as playing a supportive role, particularly when medication needed to be taken at school. This aligns with Jimmy and Jose (2011) where parents are encouraged to ask the help of a teacher to support medication adherence. These findings highlight the importance of a supportive network, where both family members and school staff play a role in maintaining medication routines.
Studies focusing on prescribers/physicians, pharmacies, pharma companies, hospital systems, insurance were not included because the aim the study specifically focused on the views of children and their parents or caregivers' perspective of antiseizure medication adherence. In studies where adults and children were included as participants of the study, only the data on children were extracted for the study.
5.1.		Strength and limitation of the study
To the best of our knowledge this is the first meta-ethnography exploring the barriers and enablers to ASMs adherence in CWE. This qualitative study builds on previous research to provide more in-depth explanation to barriers and enablers adherence in CWE. The findings of this study were influenced by the diverse healthcare systems, socioeconomic contexts, and medication access across different study settings. For instance, barriers such as high medication costs and limited healthcare access were more pronounced in low- and middle-income countries (LMICs), whereas in high-income countries, adherence challenges were more often linked to stigma, forgetfulness, and medication side effects. These differences highlight the need for context-specific interventions, as solutions effective in one setting may not be directly transferable to another. With research primarily located in tertiary centres, it is not possible to ascertain whether reasons for non-adherence differ in different contexts. We have no insight into the impact of language on antiseizure medication adherence in children despite poor communication by healthcare providers was a concern. Also, the papers included in this study did not provide information about how families were educated on antiseizure medication and its side effects. This metaethnography may be influenced by publication bias, as only published studies were included potentially favouring theoretically rich findings. Unpublished studies maybe underrepresented, shaping the synthesis toward certain interpretations. Again, differences in the quality and socio-cultural context of primary studies also influenced the development of third-order constructs. The CASP checklist for quality assessment, included studies varied in methodological rigor as majority of the studies did not clearly state patient-researcher relationship, however, the consistent emergence of themes across diverse settings supports the conceptual transferability of the findings. Selection bias has the potential to influence this meta-ethnography through the extraction of data from the primary studies. To help reduce this, the second reviewer independently reviewed the extracted data by randomly selecting five studies to ensure consistency and transparency in the inclusion of qualitative findings. The review only included studies published in English, which may have excluded relevant studies which has been published in other languages.
5.2.		Recommendation for clinical practice
Healthcare providers should consider prescribing pleasant-tasting formulations based on a child's preference to support adherence to antiseizure medications (ASMs). For younger children who struggle with swallowing, mini-tablets or granule formulations should be made available. When prescribing ASMs, healthcare professionals should routinely provide information on long-term safety to reassure parents and children, reducing the risk of non-adherence. Clear communication about potential side effects is essential to alleviate concerns and enable early identification. Healthcare providers should actively engage with
children and their parents or caregivers to address medication-related concerns and, where appropriate, offer information that fosters positive beliefs about treatment. Providing ongoing education on mobile health (mHealth) strategies to those who find them beneficial may further enhance adherence. Additionally, introducing electronic prescriptions and postal medication delivery in areas with limited healthcare access could improve convenience. Ensuring the consistent availability of ASMs in pharmacies and healthcare facilities is crucial for adherence. Lastly, family members and school staff should play a supportive role in maintaining medication routines.
6.		Conclusion
The review highlights the critical role of healthcare providers, caregivers, and social support networks in improving adherence, emphasizing the need for tailored interventions that address both individual and systemic challenges. Additionally, educational programs, improved communication strategies, and healthcare system improvements such as ensuring consistent medication supply and accessibility could enhance adherence outcomes. Given the study’s limitations, including variations in study quality and the exclusion of some child perspectives, future research should focus on, intervention-based approaches, and strategies that address the identified barriers and encourage the implementation of enablers. Addressing these gaps will contribute to better adherence strategies, ultimately improving seizure control and quality of life for children living with epilepsy.
Declaration of competing interest
This review is part of a PhD project funded by Desitin Pharma Ltd. The sponsor had no role in the study design, data collection, analysis, or interpretation of the findings. The authors declare no conflicts of interest related to this study. Prof. David Wright receives consultancy income from pharmaceutical companies including Desitin Pharma Ltd
Acknowledgments
The authors would like to thank Desitin Pharma Ltd. for funding this study and supporting the doctoral research.
Supplementary materials
Supplementary material associated with this article can be found, in the online version, at doi:10.1016/j.seizure.2025.06.016.
References
[1]		Joint Epilepsy Council of the UK and Ireland. Epilepsy prevalence, incidence, and other statistics. 2011. Available at, https://d3imrogdy81qei.cloudfront.net/in structor_docs/373/29_05_2016_Joint_Epilepsy_Council_Prevalence_and_Incidence_ September_ll.pdf. Accessed 21 October 2024.
[2]		Hakami T. Neuropharmacology of antiseizure drugs. Neuropsychopharmacol Rep 2021;41(3):336-51.
[3]		Amha Η, Memiah Ρ, Getnet A, Mengist Β, Gedfew M, Ayenew Τ, Akalu TY, Mulugeta Η, Bewket Β, Kebede Β, Petrucka P. Antiseizure medication nonadherence and its associated factors among epileptic patients in Ethiopia, a systematic review and meta-analysis. Seizure 2021;91:462-75.
[4]		Awan SA, Khawaja I, Babar Μ, Khan F. Prevalence of non-adherence to antiepileptic drugs in patients with epilepsy presenting to emergency with fits. Cureus 2022;14(7):e27072.
[5]		Faught Ε, Duh MS, Weiner JR, Guerin A, Cunnington MC. Nonadherence to antiepileptic drugs and increased mortality. Neurology 2008;71(20):1572-8.
[6]		Belayneh Z, Mekuriaw Β. A systematic review and meta-analysis of anti-epileptic medication non-adherence among people with epilepsy in Ethiopia. Arch Public Health 2020;78:1-14.
[7]		Godara Κ, Phakey Ν, Garg D, Sharma S, Das RR. Interventions to improve medication adherence in CWE: a systematic review. Cureus 2024;16(2):e54680.
[8]		Huber R, Weber Ρ. Is there a relationship between socioeconomic factors and prevalence, adherence and outcome in childhood epilepsy? A systematic scoping review. Eur J Paediatric Neurol 2022;38:1-6.
[9]		Mohammed Η, Lemnuro Κ, Mekonnen Τ, Melaku T. Adherence to anti-seizure medications and associated factors among children with epilepsy at tertiary Hospital in Southwest Ethiopia: a cross-sectional study. BMC Neurol 2022;22(1): 310.
[10]		Yang, C., Hao, Z., Yu, D., Xu, Q., Zhang, L. (2018) The prevalence rates of medication adherence and factors in fl uencing adherence to antiepileptic drugs in CWE : a systematic review and meta analysis. . 142(March), 88-99.
[11]		Yang C, Yu D, Li J, Zhang L. Prevalence of medication adherence and factors influencing adherence to antiepileptic drugs in CWE from western China: a crosssectional survey. Epilepsy Behav 2020;104:106662.
[12]		Al-Faris ΕΑ, Abdulghani ΗΜ, Mahdi ΑΗ, Salih MA, Al-Kordi AG. Compliance with appointments and medications in a pediatric neurology clinic at a University Hospital in Riyadh, Saudi Arabia. Saudi Med J 2002;23(8):969-74.
[13]		Alsous M, Hamdan I, Saleh M, McElnay J, Horne R, Masri A. Predictors of nonadherence in children and adolescents with epilepsy: a multimethod assessment approach. Epilepsy Behav 2018;85:205-11.
[14]		Asadi-Pooya ΑΑ. Drug compliance of children and adolescents with epilepsy. Seizure 2005;14(6):393-5.
[15]		Lee Y, Ah Y, Choi YJ, Cho YS, Kim KJ, Lee J. Antiepileptic drug adherence and persistence in CWE attending a large tertiary care children’s hospital. Epileptic Disord 2016;18(4):408-17.
[16]		Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 2009:6 (7):el000097.
[17]		Peters MDJ. Managing and coding references for systematic reviews and scoping reviews in EndNote. Med Ref Serv Q 2017;36(1):19-31.
[18]		Ouzzani M, Hammady Η, Fedorowicz Z, Elmagarmid A. Rayyan-a web and mobile app for systematic reviews. Syst Rev 2016;5(1):210.
[19]		Waffenschmidt S, Knelangen M, Sieben W, Buhn S, Pieper D. Single screening versus conventional double screening for study selection in systematic reviews: a methodological systematic review. BMC Med Res Methodol 2019;19(1):132.
[20]		Long HA, French DP, Brooks JM. Optimising the value of the critical appraisal skills programme (CASP) tool for quality appraisal in qualitative evidence synthesis. Res Methods Med Health Sci 2020;1(1):31-.
[21]		Noblit GW. Meta-ethnography: synthesizing qualitative studies. Stage Publication; 1988.
[22]		Atkins S, Lewin S, Smith Η, Engel M, Fretheim A, Volmink J. Conducting a metaethnography of qualitative literature: lessons learnt. BMC Med Res Methodol 2008; 8:1-10.
[23]		Daker-White G, Hays R, McSharry J, Giles S, Cheraghi-Sohi S, Rhodes Ρ, Sanders C. Blame the patient, blame the doctor or blame the system? A meta-synthesis of qualitative studies of patient safety in primary care. PLoS One 2015;10(8): eOl28329.
[24]		Toye F, Seers Κ, Allcock Ν, Briggs Μ, Carr Ε, Barker K. Meta-ethnography 25 years on: challenges and insights for synthesising a large number of qualitative studies. BMC Med Res Methodol 2014;14:1-14.
[25]		Sattar R, Lawton R, Panagioti M, Johnson J. Meta-ethnography in healthcare research: a guide to using a meta-ethnographic approach for literature synthesis. BMC Health Serv Res 2021;21:1-13.
[26]		Campbell M, Thomson Η, Katikireddi SV, Sowden A. Reporting of narrative synthesis in systematic reviews of public health interventions: a methodological assessment. The Lancet 2016;388:S34.
[27]		Lewin S, Booth A, Glenton C, Munthe-Kaas Η, Rashidian A, Wainwright M, Bohren MA, Tungalp Ó, Colvin CJ, Garside R. Applying GRADE-CERQual to qualitative evidence synthesis findings: introduction to the series. Implement Sci 2018;13:1-10.
[28]		Wo SW, Ong LC, Low WY, Lai PSM. Exploring the needs and challenges of parents and their children in childhood epilepsy care: a qualitative study. Epilepsy Behav 2018;88:268-76.
[29]		Chen HJ, Chen YC, Yang HC, Chi CS. Lived experience of epilepsy from the perspective of children in Taiwan. J Clin Nurs 2010;19(9-10):1415-23.
[30]		Webster M. Similarities and differences in the meanings children and their parents attach to epilepsy medications. Soc Sci Med 2017;177:190-7.
[31]		Harden J, Black R, Pickersgill M, Shetty J, McLellan A, Brand C, Small M, McDonnell J, Clarke L, Chin RF. Children’s understanding of epilepsy: a qualitative study. Epilepsy Behav 2021;120:107994.
[32]		Samanta D, Elumalai V, Leigh Hoyt M, Modi AC, Sajatovic M. A qualitative study of epilepsy self-management barriers and facilitators in Black children and caregivers in Arkansas. Epilepsy Behav 2022;126:108491.
[33]		Eklund PG, Sivberg B. Adolescents’ lived experience of epilepsy. J Neurosci Nurs 2003;35(1):40-9.
[34]		Muchada IF, Wilmshurst JM, Laing Ν, Davies EH, Fieggen K. A qualitative study exploring caregivers' experiences, perspectives, and expectations for precision medicine in epilepsy in South Africa. Epilepsy Behav 2021;117:107873.
[35]		Moffat C, Dorris L, Connor L, Espie CA. The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children's perspectives on living with epilepsy. Epilepsy Behav 2009;14(1):179-89.
[36]		Hightower S, Carmon M, Minick Ρ. A qualitative descriptive study of the lived experiences of school-aged children with epilepsy. J Pediatric Health Care 2002;16 (3):131-7.
[37]		McEwan MJ, Espie CA, Metcalfe J, Brodie MJ, Wilson MT. Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure 2004;13(1):15-31.
[38]		Chiu YP, Lee TY, Lin KL, Laadt VL. Adjusting to a seizure-free "new normal" life following discontinuation of antiepileptic drugs during adolescence’. Epilepsy Behav 2014;33:54-8.
[39]		Lewis A, Parsons S. Understanding of epilepsy by children and young people with epilepsy. Eur J Spec Needs Educ 2008;23(4):321-35.
[40]		Cui C, Zhou H, Chen W, Li S, Zheng X. Behavioral dilemmas and support requirements of self-management for chinese adolescents with epilepsy during transition readiness: a mixed-methods study. Patient Prefer Adherence 2023;17: 2605-19.
[41]		Carter JA, Molyneux CS, Mbuba CK, Jenkins J, Newton CR, Hartley SD. The reasons for the epilepsy treatment gap in Kilifi, Kenya: using formative research to identify interventions to improve adherence to antiepileptic drugs. Epilepsy Behav 2012;25(4):614-21.
[42]		Murugupillai R, Wanigasinghe J, Muniyandi R, Arambepola C. Parental concerns towards children and adolescents with epilepsy in Sri Lanka-qualitative study’. Seizure 2016;34:6-11.
[43]		Mwaka AD, Okello ES, Abbo C, Odwong FO, Olango W, Etolu JW, Oriyabuzu R, Lagoro DK, Mutamba ΒΒ, Idro R, Opar ΒΤ, Aceng JR, Lukwago A, Neema S. Is the glass half full or half empty? A qualitative exploration on treatment practices and perceived barriers to biomedical care for patients with nodding syndrome in postconflict northern Uganda’. BMC Res Notes 2015;8:386.
[44]		Abbo C, Mwaka AD, Opar ΒΤ, Idro R. Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda. Infect Dis Poverty 2019;8(1):30.
[45]		El Sharkawy G, Newton C, Hartley S. Attitudes and practices of families and health care personnel toward children with epilepsy in Kilifi, Kenya. Epilepsy Behav 2006; 8(1):201-12.
[46]		Galletti F, Rinna A, Acquafondata C. An insight into children’s and adolescents’ experience of seizures and epilepsy. Seizure 1998;7(4):309-16.
[47]		Chew J, Carpenter J, Haase AM. Living with epilepsy in adolescence-a qualitative study of young people’s experiences in Singapore: peer socialization, autonomy, and self-esteem. Child Care Health Dev 2019;45(2):241-50.
[48]		Mennella JA, Beauchamp GK. Optimizing oral medications for children. Clin Ther 2008;30(ll):2120-32.
[49]		Mennella JA, Spector AC, Reed DR, Coldwell SE. The bad taste of medicines: overview of basic research on bitter taste. Clin Ther 2013;35(8):1225-46.
[50]		Matsuo Κ, Palmer JB. Anatomy and physiology of feeding and swallowing: normal and abnormal. Phys Med Rehabil Clin Ν Am 2008;19(4):691-707. vii.
[51]		Emilsson M, Gustafsson PA, Òhnstròm G, Marteinsdottir I. Beliefs regarding medication and side effects influence treatment adherence in adolescents with attention deficit hyperactivity disorder. Eur Child Adolesc Psychiatry 2017;26(5): 559-71.
[52]		Warnez S, Alessi-Severini S. Clozapine: a review of clinical practice guidelines and prescribing trends. BMC Psychiatry 2014;14:1-5.
[53]		Te Paske R, Vervloet M, Linn AJ, Brabers ΑΕΜ, van Boven JFM, van Dijk L. The impact of trust in healthcare and medication, and beliefs about medication on medication adherence in a Dutch medication-using population. J Psychosom Res 2023;174:l11472.
[54]		Gandapur Y, Kianoush S, Kelli HM, Misra S, Urrea Β, Blaha MJ, Graham G, Marvel FA, Martin SS. The role of mHealth for improving medication adherence in patients with cardiovascular disease: a systematic review. Eur Heart J Qual Care Clin Outcomes 2016;2(4):237-44.
[55]		Desrosiers AS, Ibrahim JM, Jacks SK. A barrier to care: distance traveled affects adherence to treatment and follow-up plans for patients with infantile hemangioma. Pediatr Dermatol 2019;36(3):402-3.
[56]		Gabr WM, Shams MEE. Adherence to medication among outpatient adolescents with epilepsy. Saudi Pharmaceutical J 2015;23(1):33-40.
[57]		Welton J, Stratton G, Schoeninger Β, Low MH, Mioody A, D’Souza W. Shortages of antiseizure medications in Australia and the association with patient switching, and adherence in a community setting. Epilepsy Behav 2023;141:109145.
[58]		Bosak M, Slowik A, Turaj W. Safety of switching from brand-name to generic levetiracetam in patients with epilepsy. Drug Des Devel Ther 2017;11:2287-91.