The challenges that parents of children with epilepsy face: A qualitative study

Kampra, Matina; Tzerakis, Nikolaos; Thomsen, Louise Lund Holm; Katsarou, Eustathia; Voudris, Konstantinos; Mastroyianni, Sotiria; Mouskou, Stella; Drossou, Kyriaki S.; Siatouni, Anna; Gatzonis, Stylianos

doi:10.1016/j.yebeh.2017.04.034

Cited by 22 publications

(38 citation statements)

References 35 publications

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“…If possible, this should be avoided, as this can lead to a loss of information 11 . Other study results also indicated that parents did not feel sufficiently well informed to talk to their child about epilepsy and did not know how to proceed 8,14–16 . When the children in our study talked about the moment they learnt about their diagnosis, it was clear that many of them had little or no knowledge about epilepsy.…”

Section: Discussionmentioning

confidence: 67%

“…11 Other study results also indicated that parents did not feel sufficiently well informed to talk to their child about epilepsy and did not know how to proceed. 8,[14][15][16] When the children in our study talked about the moment they learnt about their diagnosis, it was clear that many of them had little or no knowledge about epilepsy. Therefore, they felt that a physician should provide the patients with detailed information about the condition during the first conversation about epilepsy.…”

Section: Discussionmentioning

confidence: 93%

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Interviews with patients aged 6–17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis

et al. 2020

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Aim Meeting children's needs when communicating an epilepsy diagnosis can have a large impact on their treatment. We investigated children's experiences and wishes concerning their first conversation about epilepsy. Methods This prospective study was performed in the neuropaediatric departments of two German university hospitals from 2 October 2018 to 12 April 2019. The semi‐structured interview contained open questions, and multiple answers were allowed. Results We interviewed 101 patients (57 male) aged 6–17 (median 11) years and asked them to put themselves in the place of a physician delivering an epilepsy diagnosis. They said they would be careful and friendly and consider the children's feelings (29%), give them detailed information about their condition (29%) and reduce their fears and offer hope (26%). They would tell them the importance of always taking their medication and explain why (25%), make sure that the conversation took place in a comfortable setting (21%), explain any safety precautions (19%), keep the conversation straightforward and provide examples (16%). Conclusion Children with epilepsy provided concrete recommendations for physicians delivering an epilepsy diagnosis, with regard to the ideal setting, important topics and optimal communication. The recommendations could help physicians meet children's needs.

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Section: Discussionmentioning

confidence: 67%

Section: Discussionmentioning

confidence: 93%

Interviews with patients aged 6–17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis

et al. 2020

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“…Many parents stated that they would like the doctors to better explain their child’s condition, spend time finding out more about the child’s condition and also discuss issues in addition to the AEDs. One study found that key challenges for parents were the disclosure of epilepsy and the lack of adequate psychosocial and emotional support 23. Parents of children with chronic conditions require time to discuss their child’s issues and doctors may not be able to provide the amount of time required.…”

Section: Discussionmentioning

confidence: 99%

Epilepsy in Papua New Guinea: a longitudinal cohort study

Duke

Vince

2019

Arch Dis Child

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Epilepsy affects up to 1-4% of children living in low income and middle countries, however there are few studies of the problems faced by children with epilepsy in such settings. We aimed to document the situation for children with epilepsy in Port Moresby, an urban area in Papua New Guinea, a low-middle income country in the Western Pacific region. We conducted longitudinal cohort study using mixed methods, with serial data collected over 2 years which assessed seizure control, neurodevelopment, and structured interviews with children and parents. For quantitative data descriptive statistics are reported; for qualitative data common responses, themes, experiences and perceptions were grouped and reported in narrative. Forty-seven children with epilepsy were followed for a median of 18 months. Twenty six (55%) children had some associated neurodevelopmental disability. Children gave detailed and vivid descriptions of their experience of seizures. Most children and parents had a positive view of the future but faced many challenges including financial difficulties, fear of having seizures especially at school, restriction of activity that isolated them from peers, and significant stigma and discrimination. Seizure control improved over time for some children, but inconsistent supply of phenobarbitone hindered better control. Comprehensive care for children with epilepsy requires a good knowledge of the individual patient —including their seizure type and comorbidities, their family, and their strengths and vulnerabilities. Children with epilepsy face many problems that can lead to isolation, discrimination and restricted opportunities.

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“…One study found that key challenges for parents were the disclosure of epilepsy and the lack of adequate information about coping in terms of psychosocial and emotional support. (20). Parents of children with chronic conditions require time to discuss their and their child's issues and doctors may not be able to provide the amount of time required.…”

Section: How Can Health Care For the Child Be Better?mentioning

confidence: 99%

Epilepsy in children in Papua New Guinea: a longitudinal cohort study

Duke

2019

Preprint

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BackgroundEpilepsy affects up to 1-4% of children living in low income and middle countries, however there are few studies of the problems faced by children with epilepsy in such settings. AimTo document the characteristics and situation for children with epilepsy in Port Moresby, an urban area in Papua New Guinea, a low-middle income country in the Western Pacific region. To describe the types of epilepsy, associated comorbidities, treatment access and barriers, the adequacy of seizure control, the quality of life and developmental opportunities, and the difficulties faced by children with epilepsy and their families. MethodsA longitudinal cohort study, following children with epilepsy over 18-24 months. Mixed methods evaluations included assessments of seizure control, medications, neurodevelopment, and structured interviews with children and parents, and a parent-diary to record additional information. ResultsForty-seven children with epilepsy were followed for a median of 18 months; 75% were being treated with phenobarbitone. Seizure control improved over time for some children, but inconsistent supply of phenobarbitone hindered better control. Twenty six (55%) children had some developmental delay. Children gave vivid descriptions of their experience of seizures.Most children and parents had a positive view of the future but faced many challenges including financial difficulties, fear of seizures especially at school, restriction of activity and stigma and discrimination. ConclusionComprehensive care for children with epilepsy requires a good knowledge of the individual patient -including their seizure type and comorbidities, their family, and their strengths and

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The challenges that parents of children with epilepsy face: A qualitative study

Cited by 22 publications

References 35 publications

Interviews with patients aged 6–17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis

Interviews with patients aged 6–17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis

Epilepsy in Papua New Guinea: a longitudinal cohort study

Epilepsy in children in Papua New Guinea: a longitudinal cohort study

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