Quality of life in adult patients with epilepsy and their family members

Mahrer‐Imhof, Romy; Jaggi, Sabina; Bonomo, Armanda; Hediger, Hannele; Eggenschwiler, Priska; Krämer, G.; Oberholzer, Erich

doi:10.1016/j.seizure.2012.11.012

Cited by 60 publications

(61 citation statements)

References 58 publications

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“…Concerning the attitude of the families in face of epilepsy, the participants of this study reported feeling protected; distancing and withdrawal of relatives; feeling as a burden to their family. In relation to this aspect, other studies (19,20) have presented results similar to those of this research. Aiming to analyze patient perceptions about epilepsy and family support and their correlation with QoL, such studies showed that participants believed that family members offered them understanding and compassion (19,20) .…”

Section: Discussionsupporting

confidence: 89%

“…In relation to this aspect, other studies (19,20) have presented results similar to those of this research. Aiming to analyze patient perceptions about epilepsy and family support and their correlation with QoL, such studies showed that participants believed that family members offered them understanding and compassion (19,20) . The findings of these studies also revealed that EIs reported a constant feeling of being different, devalued, and a nuisance to their relatives (19,20) .…”

Section: Discussionsupporting

confidence: 89%

“…Aiming to analyze patient perceptions about epilepsy and family support and their correlation with QoL, such studies showed that participants believed that family members offered them understanding and compassion (19,20) . The findings of these studies also revealed that EIs reported a constant feeling of being different, devalued, and a nuisance to their relatives (19,20) . It is possible to observe that EIs seek encouragement, acceptance, and support in the various personal relationships, especially within their families.…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

A pessoa com epilepsia: percepções acerca da doença e implicações na qualidade de vida

Hopker

Berberian

Massi

et al. 2017

CoDAS

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RESUMO Objetivo Analisar percepções de pessoas com epilepsia acerca da doença e seu impacto na qualidade de vida. Método Trata-se de um estudo qualitativo e quantitativo de corte transversal realizado em hospital de referência terciária, vinculado ao Sistema Único de Saúde. Participaram do estudo 30 pessoas com o diagnóstico de epilepsia de lobo temporal refratária. Foi aplicado questionário para a coleta dos dados sociodemográficos e clínicos, bem como das percepções acerca da doença. Avaliou-se a qualidade de vida por meio do Subjective Handicap of Epilepsye e o estigma pela Escala Estigma na Epilepsia. Resultados Foi encontrada significância na relação entre estigma e qualidade de vida com os domínios trabalho e social/pessoal, entre estigma e percepções sobre a epilepsia. As respostas fornecidas pelos participantes foram organizadas em quatro categorias: definições e causas; crises e tratamento; impacto familiar e social; impacto na vida das pessoas. Conclusão Evidenciou-se o predomínio do conhecimento restrito dos participantes acerca da epilepsia e o impacto negativo que o estigma relacionado a tal doença acarreta na qualidade de vida. Pode-se verificar que a qualidade de vida e o estigma estão diretamente relacionados ao conhecimento dos participantes sobre a epilepsia. Ressalta-se a necessidade do implemento de programas e ações que objetivem: proporcionar maior conhecimento sobre a epilepsia por parte do paciente e de seus familiares; favorecer a comunicação entre os profissionais de saúde e as PCEs; promover a participação do paciente e de seus familiares na gestão do tratamento.

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Section: Discussionsupporting

confidence: 89%

Section: Discussionsupporting

confidence: 89%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

A pessoa com epilepsia: percepções acerca da doença e implicações na qualidade de vida

Hopker

Berberian

Massi

et al. 2017

CoDAS

View full text Add to dashboard Cite

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“…Somatic and psychological health, emotional health, quality of life, and well-being have all been shown to deteriorate among caregivers of those with epilepsy [2,4]. The negative impact of caring for a loved one with epilepsy on family members is widespread and has been seen across a variety of cultures [4][5][6].…”

Section: Introductionmentioning

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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“…Mehrer-Imhof et al indicated that patients' quality of life depended on the quality of life of their family members, as their caregivers (10). Habibzade et al, in their study, revealed that 52% of caregivers had moderate and low quality of life and more that 60% of them were partly unsatisfied with the level of care they provided for them-selves.…”

Section: Introductionmentioning

confidence: 99%

The Role of Caregiver Burden in Quality of Life and Perception of Patients with Chronic Kidney Failure on Hemodialysis

Nikmanesh

Shahinfar

2016

Ann Mil Health Sci Res

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Background: Acute kidney failure is a common complication in critically ill patients of intensive care units. Objectives: The objective of this study was to examine the role of caregiver burden on quality of life and perception of patients with kidney failure. Methods: This descriptive-analytical study followed a correlational design. The statistical population included 191 patients with chronic kidney failure in the age range of 30 to 50 years old, who underwent hemodialysis at hospitals of Zahedan within 6 months, during year 2014. Overall, 54 patients were selected using the convenience sampling method. The measurement tools were the caregiver burden inventory (Novak and Guest, 1989), the quality of life scale (Rand, 1995), and the experience and perception of suffering scale (Schulz et al., 2010). Results:The results were analyzed using Pearson correlation coefficient and regression analysis. The results of the current study indicated that caregiver burden was positively and significantly correlated with physical and mental dimensions of quality of life and it was significantly and negatively related to physical and mental dimensions of perception of suffering. In addition, the results of regression analysis revealed that caregiver burden predicted 0.05 of mental and physical quality of life, 0.07 of physical perception of suffering, and 0.05 of mental perception of suffering. Conclusions: Therefore, development of community-based services, such as short-term hospitalizations, psychological and vocational rehabilitations, and follow-up treatments at home, which are among the main requirements of caregivers, need to be taken into consideration in national mental health programs.

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Quality of life in adult patients with epilepsy and their family members

Cited by 60 publications

References 58 publications

A pessoa com epilepsia: percepções acerca da doença e implicações na qualidade de vida

A pessoa com epilepsia: percepções acerca da doença e implicações na qualidade de vida

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

The Role of Caregiver Burden in Quality of Life and Perception of Patients with Chronic Kidney Failure on Hemodialysis

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