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

Abstract

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.

Pediatric patient engagement in clinical care, research and intervention development: a scoping review

“…In individual interviews, the interviewer questions the pediatric patient about the experienced facts and perception of the topic of the research question [ 36 ]. In the included studies, pediatric patients were for example interviewed about their expectations regarding the quality of the nursing care [ 37 ] or about their experiences and wishes with regard to their first conversation about epilepsy with their clinician [ 38 ]. The interviews were conducted in different ways.…”

“…The interviews were conducted in different ways. Almost all studies used a semi-structured interview [ 38 – 40 ], but a few studies conducted an unstructured interview [ 41 ]. Furthermore, the majority of interviews were held face-to-face in the clinical setting [ 37 – 39 ] or at the patients’ home [ 40 ], and a few interviews were conducted by telephone [ 39 ].…”

Self-Disclosure Patterns Among Children and Youth with Epilepsy: Impact of Perceived-Stigma

“… 18 One study found that rates of perceived stigma were higher among YWE compared to youth with other chronic illnesses. 22 Of the 5 studies 22 , 24 , 26 , 28 , 32 that discussed the prevalence of YWE self-disclosure, rates ranged from 18% 22 to 65%. 26 …”

“…18 One study found that rates of perceived stigma were higher among YWE compared to youth with other chronic illnesses. 22 Of the 5 studies 22,24,26,28,32 that discussed the prevalence of YWE self-disclosure, rates ranged from 18% 22 to 65%. 26 Regarding disclosure patterns, across studies YWE endorsed some level of concealment and disclosure, and often engaged in different disclosure behaviors depending on circumstances.…”

Physicians’ perspectives on adverse drug reactions in pediatric routine care: a survey

“…Thus, it is important that physicians take the parents' and patients' concerns seriously and provide advice to alleviate those concerns, offer support and give further explanations, e.g., on the importance of regular drug intake [9,10,26]. In addition, children and adolescents with chronic conditions desire to be actively involved in physicians' counseling [9,26,27]. Those measures also could contribute to increase patients' adherence [28][29][30].…”