Quality of Life and Burden in Caregivers of Patients with Epilepsy

Westphal-Guitti, Ana Carolina; Alonso, Neide Barreira; Migliorini, Rosa Cristina Vaz Pedroso; Silva, Tatiana Indelicato da; Azevedo, Auro Mauro; Caboclo, Luís Otávio Sales Ferreira; Sakamoto, Américo Ceiki; Yacubian, Elza Márcia Targas

doi:10.1097/01376517-200712000-00006

Cited by 64 publications

(61 citation statements)

References 20 publications

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“…This analysis is similar to the analysis of the study conducted by (Westphal-Guitti, et al 2007) who studied stress appraisal and coping in mothers of disabled and non-disabled children. They found that there is increased distress in caregivers of children with neurological disability.…”

Section: Discussionsupporting

confidence: 51%

The effectiveness of the nursing intervention program on feeling of burden and coping among caregivers of children with epilepsy

Elmalky

Mohsen

Amer

2016

IJANS

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Epilepsy is one of the most common pediatric neurological disorders, which have negative psychological, emotional, and physical consequences of providing care. Nursing intervention is a key element of managing these patients and their families in order to reduce feelings of burden and enhancing coping among caregivers. Aim: To evaluate the effectiveness of nursing intervention on a feeling of burden and coping among caregivers of children with epilepsy. Design: A quasi-experimental design (one group pretest-posttest design) was used to achieve the aim of the study. Setting: The study was conducted at the outpatient clinic at the health insurance institute in Shebin El-Kom district, Menoufia Governorate. Subject: A convenience sample of 80 caregivers was used. Tool: I-A constructed interviewing questionnaire was developed by researchers to assess socio demographic data, medical history and family caregiver's knowledge, practices and opinions regarding child with epilepsy. II-Modified version of the Zarit burden interviewing questionnaire to assess feeling of burden. III-Coping Health Inventory for Parents to assess coping patterns of care giver's. The Results: the main finding of this study illustrated that, there were statistical significance differences regarding caregivers' knowledge and practices. Reduction of the feeling of burden and improvement of coping patterns after nursing intervention than before. There was a negative correlation between caregiver's knowledge, practice and feeling of burden and there was a positive correlation between (KPO) and coping among caregivers. The majority of the studied caregivers were mothers (76%) with mean age score37.21±5.22, more than half were secondary education, and the majority (75%) was not working. Conclusion: Nursing intervention was effective in improving caregiver's knowledge, practices and opinions, feeling of burden and raising coping abilities for caregivers of children with epilepsy. Recommendation: additional nursing strategies are needed around the time of the diagnosis with longitudinal assessment and follow up for both caregivers and their children.

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Section: Discussionsupporting

confidence: 51%

The effectiveness of the nursing intervention program on feeling of burden and coping among caregivers of children with epilepsy

Elmalky

Mohsen

Amer

2016

IJANS

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“…TLE, JME). 24,25 For families where active epilepsy was reported as disruptive, we identified key concerns relating to seizure risk and the burden of bearing responsibility for treatment delivery. For other families epilepsy was not identified as a key concern and other stresses were identified from the data, such as behavioral problems, general logistical concerns, unkind responses from the public and a perceived lack of support from friends, family or external agencies.…”

Section: Discussionmentioning

confidence: 99%

Caring for a family member with intellectual disability and epilepsy: Practical, social and emotional perspectives

Thompson

Kerr

Glynn

et al. 2014

Seizure

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“…We excluded 4 nonrelevant articles and ended up with 17 publications that were specifically related to family members caring for adult PWEs (Table 1). The nonrelevant articles that were excluded contained studies focused mainly on the quality of life of family members caring for only pediatric patients with epilepsy [19,20], a study that included nonfamily caregivers [21] and a study that focused on Epilepsy & Behavior 50 (2015) [10][11][12][13] the quality of life of patients with epilepsy rather than the family member [22].…”

Section: Methodsmentioning

confidence: 99%

In focus: The everyday lives of families of adult individuals with epilepsy

Saada

Wang

Bautista

2015

Epilepsy & Behavior

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Epilepsy is a multifaceted chronic neurological disorder with diverse effects on a patient's psychosocial well-being. The impact on quality of life has been well documented, and many studies have addressed the detrimental influences epilepsy has on an individual. However, the emotional impact and the influence of the condition on family members have not been well studied. Furthermore, the majority of the studies on this topic have been confined to childhood epilepsy, and there is only scarce literature that discusses the effects on family members caring for adult patients. The purpose of this literature review was to examine the influence of adult epilepsy on the psychological and social well-being of individual family members. We explored the psychological and physical well-being, satisfaction with social circumstances, and perceived level of support in families of adult patients with intractable epilepsy. The paper also suggests best practices on how to improve the family's quality of life, as well as future directions for research. Superior medical care and a positive family support system are important conditions that can help adult individuals with epilepsy best deal with their condition.

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Quality of Life and Burden in Caregivers of Patients with Epilepsy

Cited by 64 publications

References 20 publications

The effectiveness of the nursing intervention program on feeling of burden and coping among caregivers of children with epilepsy

The effectiveness of the nursing intervention program on feeling of burden and coping among caregivers of children with epilepsy

Caring for a family member with intellectual disability and epilepsy: Practical, social and emotional perspectives

In focus: The everyday lives of families of adult individuals with epilepsy

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