Is it worth it, or possible, to measure what matters to patients with epilepsy and their caregivers?

Celani, Maria Grazia; Cantisani, Teresa Anna; Bignamini, A; Macone, Sara; Papetti, Rossella; Baiocco, Luisa

doi:10.1016/j.yebeh.2017.08.028

Cited by 4 publications

(7 citation statements)

References 12 publications

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“…While meeting pragmatic needs for day-to-day assistance mattered, our participants were acutely sensitive to the impact of their epilepsy on caregiver quality of life. The persistent need for care was perceived to cause resentment and stress for caregivers in our study as similarly reported by other authors [1,22]. To illustrate an awareness of illness impact on her family, one participant supposed, "They don't hate me because I have epilepsy."…”

Section: Discussionsupporting

confidence: 84%

“…Unpredictable episodes of altered awareness present unique challenges for daily life unmatched in other conditions. Studies in epilepsy [1][2][3]20] and other chronic illnesses [6,9] have explored the role of caregiving and quality of life of caregivers. We present a novel focus on what it was like for our participants to be the recipients of care, and how this impacted personal identity and treatment decision-making.…”

Section: Discussionmentioning

confidence: 99%

“…Drug-resistant epilepsy (DRE) is serious disorder characterized by unpredictable and intrusive seizures. Due to uncontrolled seizures, poor memory and cognitive deficits, family caregivers have to be relied upon for disease management and emotional support [1]. As a consequence, epilepsy is as much a focus of the lives of caregivers, as it is for those diagnosed with the condition [2][3][4].…”

Section: Introductionmentioning

confidence: 99%

“…Studies in epilepsy about the role of caregiver-patient dyads highlight important differences between the perspectives of patients and primary caregivers relative to the nature of caregiving. Patients have been found to be more likely to express "resignation" around needing care and were more concerned about the impact of frequent medical crises than their caregivers [1]. Factors such as lower patient quality of life scores, higher numbers of anti-seizure drugs, and lower levels of caregiver education contributed to increased caregiver burden [8].…”

Section: Introductionmentioning

confidence: 99%

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Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

Dewar¹,

Ranit

Pieters³

2021

Seizure

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To explore how a sample of people with uncontrolled seizures describe their experiences of receiving informal supportive care. Methods: Using constructivist grounded theory, in-person, semi-structured interviews were conducted in 35 adults with drug-resistant epilepsy. These 20 (57%) women and 15 (43%) men were aged 18-68 years (mean= 35.6 years), with a range of verbal comprehension scores. The majority, 28 (80%) lived in nuclear family settings. Results: Unpredictable seizures disrupted personal autonomy and generated unique challenges for everyday life. While supportive care was deemed necessary to survival, subjective reflections around the implications of care-receiving and caregiving, were ultimately experienced as mutually burdensome. Four dynamic and interactive dimensions revealed a mirrored, interactive perspective of what it meant to be a care-recipient: assuming responsibility; protecting and supervising; acknowledging reliance and setting boundaries. Care-recipience was not one-sided, but included actively hiding personal struggles as a way to shield the caregiver from the emotional and physical demands of caregiving. Relationship dynamics between caregivers and care-recipients played a major role in treatment decisionmaking. A clinically useful Theory of Reciprocal Burden resulted from our study. Conclusions: This study adds an explanatory dimension to the concept of illness burden from the perspective of care-recipients. Relationship dynamics play a key role in patient-centered epilepsy care, with clinical implications for guiding supportive caregiving, fostering independence and promoting self-management strategies.

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Section: Discussionsupporting

confidence: 84%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

Dewar¹,

Ranit

Pieters³

2021

Seizure

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“…Therefore, studies trying to collect data about patients' and carers' ideas, values, emotions, and priorities to identify new starting points, have already been initiated. 50 In this way, when clinical researchers design future epilepsy trials and discuss appropriate endpoints, they might also consider The Little Prince.…”

Section: The Future Addressing Complex Needs Of Children With Dravet Syndromementioning

confidence: 99%

Fenfluramine as antiseizure medication for epilepsy

Γώγου¹,

Cross

2021

Develop Med Child Neuro

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Fenfluramine hydrochloride has classically been described as acting pharmacologically through a serotonergic mechanism. Therefore, it was initially used as an anorectic drug, given that impaired serotonin homeostasis may be associated with increased food intake. Although positive results were documented, cardiovascular concerns resulted in its temporary withdrawal. Nevertheless, a novel role in patients with epilepsy was later suggested by isolated clinical observations. The wide application of genetic testing allowed the classification (predominantly as Dravet syndrom) of patients in whom benefit was seen, while with the development of zebrafish models, its antiepileptic properties were confirmed at a molecular level. Data from randomized clinical trials have shown a beneficial effect of fenfluramine, as an adjunct therapy, on seizure control for children with Dravet syndrome, though there is still uncertainty about the impact on neurodevelopment in these patients. No signs of heart valve disease have been documented to date. Long-term and appropriately designed clinical studies will verify whether fenfluramine is a therapeutic agent of high importance, living up to the promise shown so far.

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Enhancing the wellness of caregivers of individuals with epilepsy: The effects of a brief stress management course

Bautista

Smith

Celso

2022

Epilepsy & Behavior

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Is it worth it, or possible, to measure what matters to patients with epilepsy and their caregivers?

Cited by 4 publications

References 12 publications

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

Fenfluramine as antiseizure medication for epilepsy

Enhancing the wellness of caregivers of individuals with epilepsy: The effects of a brief stress management course

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