A Qualitative Study of the Communication and Information Needs of People with Learning Disabilities and Epilepsy with Physicians, Nurses and Carers

Overview

Journal BMC Neurol

Publisher Biomed Central

Specialty Neurology

Date 2019 Jan 21

PMID 30660202

Citations 1

Authors

Jerry Paul K Ninnoni

Affiliations

Soon will be listed here.

Abstract

Background: Living with a chronic condition such as epilepsy can have a debilitating effect on the individual and their carers. Managing epilepsy among people with learning disabilities may present a challenge because of limited communication and may require a multidisciplinary approach. The study investigated the communication and information needs of people with learning disabilities with epilepsy and their physicians, nurses and carers.

Methods: Qualitative designed was adopted to collect data from 15 community-based people with mild learning disabilities with epilepsy and 13 carers. Recorded data were transcribed verbatim and analysed thematically.

Results: A range of findings emerged related to patient communication and information needs. These included: Knowledge regarding epilepsy; involvement; honesty and openness when giving information and consistency in provision of information.

Conclusion: People with learning disabilities with epilepsy and their carers would like to know more about epilepsy, to be more involved decision makings through communication in the management of epilepsy to enable them feedback information regarding their health.

Citing Articles

Adults with intellectual disabilities' satisfaction regarding their hospitalization: A correlational descriptive study.

Gilliand M, Bernier Emch A, Perrenoud B J Intellect Disabil. 2023; 28(4):1137-1154.

PMID: 37565271 PMC: 11585189. DOI: 10.1177/17446295231193461.

References

Alvarez N, Besag F, Iivanainen M . Use of antiepileptic drugs in the treatment of epilepsy in people with intellectual disability. J Intellect Disabil Res. 1999; 42 Suppl 1:1-15. View

Britten N, Stevenson F, Barry C, Barber N, Bradley C . Misunderstandings in prescribing decisions in general practice: qualitative study. BMJ. 2000; 320(7233):484-8. PMC: 27293. DOI: 10.1136/bmj.320.7233.484. View

Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M . Patients' perspectives on services for epilepsy: a survey of patient satisfaction, preferences and information provision in 2394 people with epilepsy. Seizure. 2001; 9(8):551-8. DOI: 10.1053/seiz.2000.0450. View

Kaiser A, Hester P, McDuffie A . Supporting communication in young children with developmental disabilities. Ment Retard Dev Disabil Res Rev. 2001; 7(2):143-50. DOI: 10.1002/mrdd.1020. View

Kerr M, Bowley C . Evidence-based prescribing in adults with learning disability and epilepsy. Epilepsia. 2001; 42 Suppl 1:44-5; discussion 50-1. DOI: 10.1046/j.1528-1157.2001.00515.x. View

Bradshaw J . Complexity of staff communication and reported level of understanding skills in adults with intellectual disability. J Intellect Disabil Res. 2001; 45(Pt 3):233-43. DOI: 10.1046/j.1365-2788.2001.00318.x. View

Perkins R . What constitutes success? The relative priority of service users' and clinicians' views of mental health services. Br J Psychiatry. 2001; 179:9-10. DOI: 10.1192/bjp.179.1.9. View

Vermeire E, Hearnshaw H, Van Royen P, Denekens J . Patient adherence to treatment: three decades of research. A comprehensive review. J Clin Pharm Ther. 2001; 26(5):331-42. DOI: 10.1046/j.1365-2710.2001.00363.x. View

. Clinical guidelines for the management of epilepsy in adults with an intellectual disability. Seizure. 2001; 10(6):401-9. DOI: 10.1053/seiz.2001.0528. View

10.

Tiffin P, Perini A . The use of antiepileptic drugs in learning disabled people with epilepsy: an audit of adult in-patients in a treatment and continuing care service. Seizure. 2001; 10(7):500-4. DOI: 10.1053/seiz.2001.0539. View

11.

Young A, Flower L . Patients as partners, patients as problem-solvers. Health Commun. 2002; 14(1):69-97. DOI: 10.1207/S15327027HC1401_4. View

12.

Williams M, Davis T, Parker R, Weiss B . The role of health literacy in patient-physician communication. Fam Med. 2002; 34(5):383-9. View

13.

Mead N, Bower P . Patient-centred consultations and outcomes in primary care: a review of the literature. Patient Educ Couns. 2002; 48(1):51-61. DOI: 10.1016/s0738-3991(02)00099-x. View

14.

Lesar T . Tenfold medication dose prescribing errors. Ann Pharmacother. 2002; 36(12):1833-9. DOI: 10.1345/aph.1C032. View

15.

Sander J . The natural history of epilepsy in the era of new antiepileptic drugs and surgical treatment. Epilepsia. 2003; 44 Suppl 1:17-20. DOI: 10.1046/j.1528-1157.44.s.1.1.x. View

16.

Marinker M, Shaw J . Not to be taken as directed. BMJ. 2003; 326(7385):348-9. PMC: 1125224. DOI: 10.1136/bmj.326.7385.348. View

17.

Elwyn G, Todd S, Hibbs R, Thapar A, Edwards P, Webb A . A 'real puzzle': the views of patients with epilepsy about the organisation of care. BMC Fam Pract. 2003; 4:4. PMC: 161791. DOI: 10.1186/1471-2296-4-4. View

18.

Espie C, Watkins J, Duncan R, Sterrick M, McDonach E, Espie E . Perspectives on epilepsy in people with intellectual disabilities: comparison of family carer, staff carer and clinician score profiles on the Glasgow Epilepsy Outcome Scale (GEOS). Seizure. 2003; 12(4):195-202. DOI: 10.1016/s1059-1311(02)00265-0. View

19.

Shore D . Communicating in times of uncertainty: the need for trust. J Health Commun. 2003; 8 Suppl 1:13-4. DOI: 10.1080/713851977. View

20.

Graneheim U, LUNDMAN B . Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004; 24(2):105-12. DOI: 10.1016/j.nedt.2003.10.001. View