Carer's perceptions of paediatric epilepsy services with and without epilepsy specialist nurses: A thematic analysis

被引：2

作者：

Beesley, Rebekah E. ^{[1
]}

Lew, Adina R. ^{[1
]}

Hindley, Daniel ^{[2
]}

Jameson, Helen ^{[2
]}

Panwar, Nitin ^{[3
]}

Walton, Chris ^{[1
]}

机构：

[1] Univ Lancaster, Psychol Dept, Lancaster LA1 4YF, England

[2] Bolton NHS Fdn Trust, Farnworth, England

[3] Manchester Univ Fdn NHS Trust, Manchester, England

来源：

SEIZURE-EUROPEAN JOURNAL OF EPILEPSY | 2022年 / 103卷

基金：

英国经济与社会研究理事会;

关键词：

Children with Epilepsy; Epilepsy specialist nurse; Paediatric epilepsy services; CHILDHOOD EPILEPSY; CHILDREN; COMORBIDITIES; EXPERIENCES;

D O I：

10.1016/j.seizure.2022.10.010

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

Purpose: To obtain in-depth perspectives from carers concerning their relationships with paediatric epilepsy services with and without an Epilepsy Specialist Nurse (ESN).Methods: Semi-structured interviews with 58 carers, 37 from service areas with an ESN, and 21 from areas without an ESN in the North-West of England, were conducted and analysed using Thematic Analysis adopting a realist epistemological position.Results: Four themes relating to different aspects of carers' needs were identified. These were needs for under-standing the condition, ongoing condition management support, educational liaison support, and emotional support. The ESNs were able to meet these diverse support needs of families proactively and sensitively, whereas in services without ESNs, carers were left to attempt to fulfil needs across different contexts in an ad hoc manner.Conclusion: Paediatric ESNs provide an essential resource for both CWE, carers and other professionals involved in the care of CWE that helps to mitigate carer burden.

引用

页码：26 / 31

页数：6

共 20 条

[1] Behavioral and psychiatric comorbidities in pediatric epilepsy: Toward an integrative model
Austin, Joan K.
Caplan, Rochelle
[J]. EPILEPSIA, 2007, 48 (09) : 1639 - 1651
[2] Carer evaluations of paediatric epilepsy services with and without epilepsy specialist nurse provision
Beesley, Rebekah E.
Walton, Chris
Hindley, Daniel
Jameson, Helen
Panwar, Nitin
Lew, Adina R.
[J]. SEIZURE-EUROPEAN JOURNAL OF EPILEPSY, 2021, 91 : 174 - 180
[3] Care delivery and self management strategies for adults with epilepsy
Bradley, Peter M.
Lindsay, Bruce
Fleeman, Nigel
[J]. COCHRANE DATABASE OF SYSTEMATIC REVIEWS, 2016, (02):
[4] Braun V., 2006, Qualitative research in psychology, V3, P77, DOI [10.1191/1478088706qp063oa, doi:10.1191/1478088706qp063oa, DOI 10.1191/1478088706QP063OA]
[5] Incidence, prevalence and aetiology of seizures and epilepsy in children
Camfield, Peter
Camfield, Carol
[J]. EPILEPTIC DISORDERS, 2015, 17 (02) : 117 - 123
[6] Campbell F., 2019, Epilespy specialist nurses the evidence (ESPENTE): a systematic mapping review
[7] Eklund Pernilla Garmy, 2003, J Neurosci Nurs, V35, P40
[8] Examining clinically relevant levels of depressive symptoms in mothers following a diagnosis of epilepsy in their children: a prospective analysis
Ferro, Mark Anthony
Speechley, Kathy Nixon
[J]. SOCIAL PSYCHIATRY AND PSYCHIATRIC EPIDEMIOLOGY, 2012, 47 (09) : 1419 - 1428
[9] Family Cohesion and Adaptation in Pediatric Chronic Conditions: The Missing Link of the Family's Condition Management
Gameiro Pompeu Mendes, Teresa Paula
Mesquita Crespo, Carla Alexandra
Austin, Joan Kessner
[J]. JOURNAL OF CHILD AND FAMILY STUDIES, 2016, 25 (09) : 2820 - 2831
[10] Families' experiences of living with pediatric epilepsy: A qualitative systematic review
Harden, Jeni
Black, Rebecca
Chin, Richard F. M.
[J]. EPILEPSY & BEHAVIOR, 2016, 60 : 225 - 237

← 1 2 →