Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies

Chong, Lauren; Jamieson, Nathan; Gill, Deepak; Singh‐Grewal, Davinder; Craig, Jonathan C.; Ju, Angela; Hanson, Camilla S.; Tong, Allison

doi:10.1542/peds.2016-0658

Cited by 59 publications

(35 citation statements)

References 69 publications

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“…In this way, the analysis considered multiple perspectives on the data to arguably produce a more complete analysis of the data. Some researchers refer to this process as "investigator triangulation" (Flick, 2004); a similar approach has been adopted in other systematic reviews as an alternative to interrater reliability (e.g., Chong et al, 2016).…”

Section: Thematic Synthesismentioning

confidence: 99%

Making and Communicating Decisions About Sexual Consent During Drug-Involved Sex: A Thematic Synthesis

Smith

Kolokotroni

Turner-Moore

2020

The Journal of Sex Research

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Sexual consent is a central component in the primary prevention of sexual violence. There is growing evidence of the impact that alcohol consumption has on sexual consent. However, there has been no review examining sexual consent in the context of other drug-taking. Published literature was sought using searches of: PsycINFO, PsycARTICLES, Scopus, Web of Science, CINAHL, MEDLINE and Open Dissertations. Unpublished literature, such as unpublished government or charity reports, were identified through Google search engine. All 21 eligible studies employed qualitative or mixed methods; therefore, a thematic synthesis was deemed an appropriate method of analysis. Three themes were constructed: "Drug-taking changes sexual norms", "Drug-taking diminishes the capacity to make sexual decisions" and "Drug-taking reduces verbal and non-verbal ability to communicate consent". The findings demonstrated that prevailing models of sexual consent may not account for circumstances relevant to drug-involved sex, such as how drug-taking impacts freedom and capacity to consent to sex. We propose the use of the medical model of capacity to consent as a broader framework through which capacity to consent to sex in drug-taking contexts can be assessed. The importance of both the social and situational context for sexual decision-making following drug-taking is discussed.

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Section: Thematic Synthesismentioning

confidence: 99%

Making and Communicating Decisions About Sexual Consent During Drug-Involved Sex: A Thematic Synthesis

Smith

Kolokotroni

Turner-Moore

2020

The Journal of Sex Research

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“…Many experience a loss of freedom and lack of control over their bodies associated with the unpredictable nature of epilepsy. 72 We also know that children's voices are usually underrepresented in terms of what treatment approaches they find most meaningful and supportive. Thus, whenever clinicians engage in conversations surrounding medical/surgical decision making, it is essential to support patients in exercising their voice and allowing them to exert some control over their lives.…”

Section: Building Support For Youth With Epilepsy Facing Challenging mentioning

confidence: 99%

The Dilemma of Hemispherectomy for Rasmussen's Encephalitis in a Neurologically Intact Child

Borlot

Yau

Olivieri

et al. 2020

Journal of Pediatric Epilepsy

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Rasmussen's encephalitis is a rare drug-resistant focal epilepsy characterized by progressive hemiparesis, hemianopia, and cognitive decline. Hemispherectomy is currently the only known treatment that can be curative, though expected to cause postoperative motor and visual deficits in children and adolescents. To date, medical treatment with antiseizure medications and immunosuppressive agents can only offer partial, delayed, or temporary alleviation of symptoms. Hence, patients and families are often faced with the difficult decision to consider the possibility of seizure freedom at the cost of incurring permanent deficits. Here, we discussed the unique ethical issues when faced with a cure that can cause harm, and also discussed a shared decision-making approach guided by informed consent, principles of autonomy, and patient-centered values.

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“…Increased risk for emotional and behavioral challenges is frequently reported in pediatric chronic diseases such as epilepsy, sickle cell disease, and cystic fibrosis, as well as a variety of genetic conditions (e.g., neurofibromatosis type 1 [NF1], Turner syndrome, and fragile X syndrome) (Chong et al, ; Hijmans et al, ; Lesniak‐Karpiak, Mazzocco, & Ross, ; Smith, Modi, Quittner, & Wood, ). For children with chronic health conditions, a complex array of factors may contribute to emotional problems such as anxiety, depression, and social withdrawal (Schwartz, Tuchman, Hobbie, & Ginsberg, ).…”

Section: Introductionmentioning

confidence: 99%

Emotional functioning among children with neurofibromatosis type 1 or Noonan syndrome

McNeill

Hudock

Foy

et al. 2019

American J of Med Genetics Pt A

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While neurofibromatosis type 1 (NF1) and Noonan syndrome (NS) are clinically distinct genetic syndromes, they have overlapping features because they are caused by pathogenic variants in genes encoding molecules within the Ras-mitogen-activated protein kinase signaling pathway. Increased risk for emotional and behavioral challenges has been reported in both children and adults with these syndromes. The current study examined parent-report and self-report measures of emotional functioning among children with NF1 and NS as compared to their unaffected siblings. Parents and children with NS (n = 39), NF1 (n = 39), and their siblings without a genetic condition (n = 32) completed well-validated clinical symptom rating scales. Results from parent questionnaires indicated greater symptomatology on scales measuring internalizing behaviors and symptoms of attention deficit hyperactivity disorder (ADHD) in both syndrome groups as compared with unaffected children. Frequency and severity of emotional and behavioral symptoms were remarkably similar across the two clinical groups. Symptoms of depression and anxiety were higher in children who were also rated as meeting symptom criteria for ADHD. While self-report ratings by children generally correlated with parent ratings, symptom severity was less pronounced. Among unaffected siblings, parent ratings indicated higher than expected levels of anxiety. Study findings may assist with guiding family-based interventions to address emotional challenges. K E Y W O R D Sanxiety, depression, emotional function, neurofibromatosis type 1, Noonan syndrome, RASopathies

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Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies

Abstract: CONTEXT: Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes. OBJECTIVE:To describe the perspectives of children and adolescents with epilepsy.

Cited by 59 publications

References 69 publications

Making and Communicating Decisions About Sexual Consent During Drug-Involved Sex: A Thematic Synthesis

Making and Communicating Decisions About Sexual Consent During Drug-Involved Sex: A Thematic Synthesis

The Dilemma of Hemispherectomy for Rasmussen's Encephalitis in a Neurologically Intact Child

Emotional functioning among children with neurofibromatosis type 1 or Noonan syndrome

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