FLIP&amp;FLAP—A training programme for children and adolescents with epilepsy, and their parents

Jantzen, S; Müller–Godeffroy, Esther; Hallfahrt-Krisl, T.; Aksu, Fuat; Püst, B.; Kohl, Bernard; Redlich, Alexander; Sperner, J.; Thyen, Ute

doi:10.1016/j.seizure.2009.04.007

Cited by 83 publications

(71 citation statements)

References 28 publications

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“…This somewhat disappointing result may indicate that increases in subjective QoL require major changes in social relationships, health status, or participation in new activities to alter self-perception of one's life having significantly improved. We note that one study found improvements in aspects of QoL, such as social exclusion, using a group intervention for CYPE [14]. It is, therefore, important to consider what type of intervention is likely to improve particular aspects of self-rated QoL, as health related QoL is a multi-faceted complex construct.…”

Section: Discussionmentioning

confidence: 94%

“…This could be an important factor in improving friendship quality and participation in group activities. Many young people with epilepsy report feeling isolated from peers [6,14] and this can have an important developmental cost during adolescence -a period where young people typically engage as a group in behaviors associated with a level of risk as they navigate the increased levels of autonomy and independence available to them. The importance of participation in 'normal' group learning experiences and activities during adolescence offers key opportunities for personal growth, and social exclusion may be linked to later negative outcomes such as poorer quality of life (QoL) [36].…”

Section: Discussionmentioning

confidence: 99%

“…There is some evidence that psychological therapeutic groups focused on changing young people's cognitions and illness appraisals, as well as enhancing their coping skills, may be an effective treatment for psychosocial difficulties associated with paediatric epilepsy [13][14][15]. Funderburk, McCormick and Austin [16] also found that YPWE who have a more positive attitude towards having epilepsy are less likely to have poor self-concept and behavior problems.…”

Section: Introductionmentioning

confidence: 99%

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A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]

Dorris

Broome

Wilson

et al. 2017

Epilepsy & Behavior

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We conducted an exploratory RCT to examine feasibility and preliminary efficacy for a manual-based psychosocial group intervention aimed at improving epilepsy knowledge, self-management skills, and quality of life in young people with epilepsy. Method: Eighty-three participants (33:50 m/f; age range 12-17 years) were randomized to either the treatment or control group in seven tertiary paediatric neuroscience centres in the UK, using a wait-list control design. Participants were excluded if they reported suicidal ideation and/or scored above the cut off on mental health screening measures, or if they had a learning disability or other neurological disorder. The intervention consisted of six weekly 2-hour sessions using guided discussion, group exercises and role-plays facilitated by an epilepsy nurse and a clinical psychologist. Results: At three month follow up the treatment group (n = 40) was compared with a wait-list control group (n = 43) on a range of standardized measures. There was a significant increase in epilepsy knowledge in the treatment group (p = 0.02). Participants receiving the intervention were also significantly more confident in speaking to others about their epilepsy (p = 0.04). Quality of life measures did not show significant change. Participants reported the greatest value of attending the group was: Learning about their epilepsy (46%); Learning to cope with difficult feelings (29%); and Meeting others with epilepsy (22%). Caregiver and facilitator feedback was positive, and 92% of participants would recommend the group to others. Conclusion: This brief psychosocial group intervention was effective in increasing participants' knowledge of epilepsy and improved confidence in discussing their epilepsy with others. We discuss the qualitative feedback, feasibility, strengths and limitations of the PIE trial.

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]

Dorris

Broome

Wilson

et al. 2017

Epilepsy & Behavior

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“…40 These interventions aimed to increase medical knowledge about epilepsy, as well as educate families about the management of their children's symptoms. 40 Three studies reported a postintervention increase in parent and child knowledge [41][42][43] ; two resulted in improved family functioning 42 or parental anxiety 44 ; two reported no impact on level of caregiver depression or anxiety 43,45 ; and one was not evaluated. 46 Beyond educating parents about the management of their children's epilepsy, our findings suggest that the implementation and evaluation of family centered care practices that address caregiver well-being and provide linkages to supportive community resources may result in more promising HRQL for children and families.…”

Section: Discussionmentioning

confidence: 99%

Correlates of health‐related quality of life in children with drug resistant epilepsy

et al. 2016

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SUMMARYObjective: Health-related quality of life (HRQL) is compromised in children with epilepsy. The current study aimed to identify correlates of HRQL in children with drug resistant epilepsy. Methods: Data came from 115 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Individual, clinical, and family factors were evaluated. HRQL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE), a parent-rated epilepsy-specific instrument, with composite scores ranging from 0 to 100. A series of univariable linear regression analyses were conducted to identify significant associations with HRQL, followed by a multivariable regression analysis. Results: Children had a mean age of 11.85 AE 3.81 years and 65 (56.5%) were male. The mean composite QOLCE score was 60.18 AE 16.69. Child age, sex, age at seizure onset, duration of epilepsy, caregiver age, caregiver education, and income were not significantly associated with HRQL. Univariable regression analyses revealed that a higher number of anti-seizure medications (p = 0.020), lower IQ (p = 0.002), greater seizure frequency (p = 0.048), caregiver unemployment (p = 0.010), higher caregiver depressive and anxiety symptoms (p < 0.001 for both), poorer family adaptation, fewer family resources, and a greater number of family demands (p < 0.001 for all) were associated with lower HRQL. Multivariable regression analysis showed that lower child IQ (b = 0.20, p = 0.004), fewer family resources (b = 0.43, p = 0.012), and caregiver unemployment (b = 6.53, p = 0.018) were associated with diminished HRQL in children. Significance: The results emphasize the importance of child cognition and family variables in the HRQL of children with drug-resistant epilepsy. The findings speak to the importance of offering comprehensive care to children and their families to address the nonmedical features that impact on HRQL. KEY WORDS: Pediatric epilepsy, Health-related quality of life, Family.Epilepsy in children can often have catastrophic consequences on multiple domains of health-related quality of life (HRQL). HRQL is defined by the World Health Organization (WHO) as a broad, multidimensional construct including not only the disease state but also the person's physical, psychological, and social well-being. This term refers to the impact, both subjective and objective, of dysfunction associated with illness or injury, and treatment. FULL-LENGTH ORIGINAL RESEARCHsubstantial body of literature suggests that HRQL is impaired in children with epilepsy, 2 who have higher rates of behavioral, cognitive, emotional, social, and academic problems compared to healthy children or children with other chronic health conditions. [3][4][5][6][7][8][9][10] In light of these findings, a predominant objective of the management of pediatric epilepsy is to both improve and prevent potential declines in patient HRQL.11 Correspondingly, a comprehensive understanding of the factors that...

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“…국외에서는 간질아동을 대상으로 교육과 인지행동치료가 통합적 으로 제공된 중재 [9], 교육 중재 [10][11][12][13], 인지행동치료 [14], 운동중재 [15], 상담 [16] [7,20,21]. Bandura [22] Table 2).…”

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Development and Evaluation of the Empowering A Self-Efficacy (EASE) Program for Children with Epilepsy

Yoo

Kim

2015

J Korean Acad Nurs

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연구의 필요성연구자Purpose: The purpose of this study was to verify effects of the Empowering A Self-Efficacy (EASE) program on self-efficacy, self-management, and child attitude toward illness in children with epilepsy. Methods: This was a quasi-experimental study with a non-equivalent control group pre-post test design. Participants were 10 to 15 year old children with epilepsy (11 in the experimental group and 10 in the control group) who were registered at one hospital in S city. The experimental group received the EASE program for 3 weeks. In the first week, a group meeting lasting 570 minutes was conducted on a single day. Over the next two weeks, telephone counselling was conducted twice a week. Data were analyzed using SPSS 18.0. Results: There was a significant difference of pre-post evaluation of the epilepsy self-management scores in the experimental group. However, differences between the experimental group and the control group for seizure self-efficacy and child attitude toward illness were not significant. Conclusion: This is the first study in Korea to develop and evaluate an intervention program for children with epilepsy. Further studies are needed to confirm the effects of the EASE program.Key words: Epilepsy, Childhood, Self efficacy, Self care, Program evaluation

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FLIP&FLAP—A training programme for children and adolescents with epilepsy, and their parents

Abstract: FLIP&FLAP is an effective child- and family-centred programme. It is currently being established in Northern Germany to test its usefulness in routine care.

Cited by 83 publications

References 28 publications

A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]

A randomized controlled trial of a manual-based psychosocial group intervention for young people with epilepsy [PIE]

Correlates of health‐related quality of life in children with drug resistant epilepsy

Development and Evaluation of the Empowering A Self-Efficacy (EASE) Program for Children with Epilepsy

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