The impact of childhood epilepsy on quality of life: A qualitative investigation using focus group methods to obtain children's perspectives on living with epilepsy

Epilepsy and Behavior

Volumn 14, Issue 1, 2009, Pages 179-189

  Moffat, Catriona ^a   Dorris, Liam ^a,b   Connor, Linda ^b   Espie, Colin A ^a  

^a UNIVERSITY OF GLASGOW   (United Kingdom)

^b ROYAL HOSPITAL FOR SICK CHILDREN   (United Kingdom)

Author keywords

Childhood epilepsy; Focus groups; Quality of life

Indexed keywords

ANTICONVULSIVE AGENT; CARBAMAZEPINE; CLOBAZAM; ETHOSUXIMIDE; ETIRACETAM; LAMOTRIGINE; VALPROIC ACID;

ADOLESCENT; AGE; ARTICLE; ATTITUDE TO ILLNESS; BENIGN CHILDHOOD EPILEPSY; CHILD BEHAVIOR; CLINICAL ARTICLE; FEMALE; GROUNDED THEORY; HUMAN; MALE; PATIENT ATTITUDE; QUALITATIVE RESEARCH; QUALITY OF LIFE; SCHOOL CHILD; THEORETICAL MODEL; UNSPECIFIED SIDE EFFECT;

AGE FACTORS; AGE OF ONSET; ANTICONVULSANTS; CHILD; DATA INTERPRETATION, STATISTICAL; EPILEPSIES, PARTIAL; EPILEPSY; EPILEPSY, GENERALIZED; FEMALE; FOCUS GROUPS; HUMANS; MALE; MODELS, PSYCHOLOGICAL; QUALITY OF LIFE; SCOTLAND; SEIZURES; SOCIAL BEHAVIOR;

EID: 58149145601     PISSN: 15255050     EISSN: 15255069     Source Type: Journal    
DOI: 10.1016/j.yebeh.2008.09.025     Document Type: Article

References (38)

1. World Health Organisation Web site: http://www.who.int/msa/qol/ql1.htm. [Accessed 20 February 2003].
2. Spieth L.E., and Harris C.V. Assessment of health-related quality of life in children and adolescents: an integrative review. J Pediatr Psychol 21 (1995) 175-193
3. Andelman F. Analysis of quality of life among adolescents with epilepsy. Int J Adolesc Mental Health 12 Suppl 1 (2000) 17-24
4. Baker G.A. Quality of life and epilepsy: the Liverpool experience. Clin Ther 20 Suppl A (1998) A2-A12
5. Williams J., and Sharp G.B. Epilepsy. In: Yeates K.O., Douglas M.R., and Taylor H.G. (Eds). Paediatric neuropsychology: research theory and practice (1999), Guilford Press, New York 47-73
6. Engel J. In: Baker G., and Jacoby A. (Eds). Quality of life in epilepsy (2002), Routledge, New York xiii-xiv
7. Hoare P., and Mann H. Self-esteem and behavioural adjustment in children with epilepsy and children with diabetes. J Psychosomatic Res 38 (1994) 859-869
8. Austin J.K., Smith M.S., Risinger M.W., and McNelis A.M. Childhood epilepsy and asthma: comparison of quality of life. Epilepsia 35 (1994) 608-615
9. Eiser C., Mohay H., and Morse R. The measurement of quality of life in young children. Child Care Health Dev 26 (2000) 401-413
10. Phillips K, Power M, Atherton C. Quality of life in children and adolescents: an introduction to the European KIDSCREEN Project. Presented at the BPS Scottish Conference, November 2002.
11. Apajasalo M., Rautonen C., Holmberg J., et al. Quality of life in pre-adolescence: a 17-dimensional health-related measure (17D). Qual Life Res 5 (1996) 532-538
12. McEwan M.J., Espie C.A., Metcalfe J., Brodie M.J., and Wilson M.T. Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure 13 (2004) 15-31
13. Brown S.W. Quality of life: a view from the playground. Seizure 3 (1994) 11-15
14. Dorenbaum D., Cappelli M., Keene D., and McGrath P.J. Use of a child behaviour checklist in the psychosocial assessment of children with epilepsy. Clin Pediatr 24 (1985) 634-637
15. Hanai T. Quality of life in children with epilepsy. Epilepsia 37 (1996) 28-32
16. Ronen G.M., Rosenbaum P., Law M., and Streiner D.L. Health related quality of life in childhood disorders: a modified focus group technique to involve children. Qual Life Res 10 (2001) 71-79
17. Wilde M., and Haslam C. Living with epilepsy: a qualitative study investigating the experiences of young people attending outpatient clinics in Leicester. Seizure 5 (1996) 63-72
18. Varni J.W., Seid M., and Rode C.A. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37 (1999) 126-139
19. Heary C.M., and Hennessy E. The use of focus group interviews in pediatric health care research. J Pediatr Psychol 27 (2002) 47-57
20. Donaldson M. Children's minds (1978), Fontana Press, London
21. Lewis A. Group child interviews as a research tool. Br Educ Res J 18 (1992) 413-421
22. Levine I.S., and Zimmerman J.D. Using qualitative data to inform public policy: evaluating Choose to De-Fuse. Am J Orthopsychiatry 66 (1996) 363-377
23. Morgan M., Gibbs S., Maxwell K., and Britten N. Hearing children's voices: methodological issues in conducting focus groups with children aged 7-11 years. Qual Res 2 (2002) 5-20
24. Mohay H. Interviewing children and adolescents. In: Sanders M., Mitchell C., and Byrne G. (Eds). Medical consultation skills: behavioural and interpersonal dimensions of health care (2000), Addison-Wesley, Melbourne 131-150
25. CASP. The Critical Appraisal Skills Programme: 10 Questions to Help You Make Sense of Qualitative Research 2000, The CASP Office: Oxford.
26. Vaughn S., Shay Schumm J., and Sinagub J. Focus group interviews in education and psychology (1996), Sage, London
27. Hoppe M.J., Wells E.A., Morrison D.M., Gillmore M.R., and Wilsdon A. Using focus groups to discuss sensitive topics with children. Eval Rev 19 (1995) 102-114
28. Krueger R.A. Focus groups: A practical guide for applied research. 3rd ed. (2001), Sage, London
29. Glaser B.G., and Strauss A.L. The discovery of grounded theory: strategies for qualitative research (1967), Aldine, New York
30. Green J., and Hart L. The impact of context on data. In: Barbour R.S., and Kitzinger J. (Eds). Developing focus group research: politics theory and practice (1999), Sage, London 21-35
31. Humberstone V. The experiences of people with schizophrenia living in supported accommodation: a qualitative study using grounded theory methodology. Aust NZ J Psychiatry 36 (2002) 367-372
32. Strauss A., and Corbin J. Basics of qualitative research: grounded theory procedures and techniques (1998), Sage, London
33. Cramer J.A., Westbrook L.E., Devinsky O., Perrine K., Glassman M.B., and Camfield C. Development of the Quality of Life in Epilepsy Inventory for Adolescents: the QOLIE-AD-48. Epilepsia 40 (1999) 1114-1121
34. Hoare P., and Russell M. The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Dev Med Child Neurol 37 (1995) 689-696
35. Sabaz M., Cairns D.R., Lawson J.A., Bleasel A.F., and Bye A.M.E. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia 42 (2001) 621-628
36. Carr A. The Handbook of child and adolescent psychology (1999), Brunner-Routledge, Hove
37. Townshend K.H., Dorris L., McEwan M.J., et al. Development and validation of a measure of the impact of epilepsy on a young person's quality of life: Glasgow Epilepsy Outcome Scale for Young Persons (GEOS-YP). Epilepsy Behav 12 (2008) 115-123
38. Michell L. Combining focus groups and interviews: telling how it is; telling how it feels. In: Barbour R.S., and Kitzinger J. (Eds). Developing focus group research: politics, theory and practice (1999), Sage, London 36-46