Dorris Liam, Broome Helen, Wilson Margaret, Grant Cathy, Young David, Baker Gus, Balloo Selina, Bruce Susan, Campbell Jo, Concannon Bernie, Conway Nadia, Cook Lisa, Davis Cheryl, Downey Bruce, Evans Jon, Flower Diane, Garlovsky Jack, Kearney Shauna, Lewis Susan, Stephens Victoria, Turton Stuart, Wright Ingram
Institute of Mental Health & Wellbeing, University of Glasgow, Glasgow G12 OXH, Scotland, UK; Paediatric Neurosciences Research Group, Royal Hospital for Children, Glasgow G51 4TF, Scotland, UK.
Institute of Mental Health & Wellbeing, University of Glasgow, Glasgow G12 OXH, Scotland, UK; Paediatric Neurosciences Research Group, Royal Hospital for Children, Glasgow G51 4TF, Scotland, UK.
Epilepsy Behav. 2017 Jul;72:89-98. doi: 10.1016/j.yebeh.2017.04.007. Epub 2017 Jun 7.
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.
Eighty-three participants (33:50m/f; age range 12-17years) 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.
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.
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.
我们开展了一项探索性随机对照试验，以检验一种基于手册的心理社会小组干预措施对改善癫痫患儿的癫痫知识、自我管理技能和生活质量的可行性和初步疗效。
在英国的七个三级儿科神经科学中心，采用等待名单对照设计，将83名参与者（男33名，女50名；年龄范围12 - 17岁）随机分为治疗组或对照组。如果参与者报告有自杀意念和/或在心理健康筛查措施中的得分高于临界值，或者有学习障碍或其他神经系统疾病，则将其排除。干预措施包括由一名癫痫护士和一名临床心理学家通过引导式讨论、小组练习和角色扮演进行的为期六周、每周两小时的课程。
在三个月的随访中，将治疗组（n = 40）与等待名单对照组（n = 43）在一系列标准化测量指标上进行比较。治疗组的癫痫知识有显著增加（p = 0.02）。接受干预的参与者在与他人谈论自己的癫痫方面也明显更有信心（p = 0.04）。生活质量测量指标没有显示出显著变化。参与者报告参加小组的最大收获是：了解自己的癫痫（46%）；学会应对困难情绪（29%）；结识其他癫痫患者（22%）。照顾者和促进者的反馈是积极的，92%的参与者会向他人推荐这个小组。
这种简短的心理社会小组干预有效地增加了参与者对癫痫的知识，并提高了他们与他人讨论癫痫的信心。我们讨论了PIE试验的定性反馈、可行性、优点和局限性。
