Quality of epilepsy treatment and services: the views of women with epilepsy

Wallace, H.K.; Solomon, John T.

doi:10.1053/seiz.1998.0266

Cited by 22 publications

(15 citation statements)

References 7 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Secondly, although the participants were asked to propose different or new structures for epilepsy services, their views were not well formulated and had to be interpreted by the research team on the basis of their dissatisfaction with existing systems. The results however confirm previous work showing that not enough time is given to provide support [15], that the psychosocial dimension of epilepsy is given little credence [16] and that patients are seldom seen as legitimate agents in the management of their epilepsy [15,20]. …”

Section: Discussionsupporting

confidence: 84%

“…Given this longstanding but largely professional debate, it was considered important to seek the views of people who have direct experience of epilepsy. Although we identified many surveys [9-14], few studies have examined patient perspectives in any depth [15,16], and we could not find research that had sought views on service design or using focus groups of patients. A qualitative study was therefore performed to explore the experiences of individuals who have a diagnosis of epilepsy and their views about how services should best be organised.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

A 'real puzzle': the views of patients with epilepsy about the organisation of care

Elwyn

Todd

Hibbs³

et al. 2003

BMC Fam Pract

View full text Add to dashboard Cite

BackgroundLittle is known about how individuals who have a diagnosis of epilepsy have experienced healthcare services or their views about how they should best be organised to meet their ongoing needs.MethodsFocus group interviews. Individuals with epilepsy were identified in 5 practices in Wales: 90 were invited, 40 confirmed attendance and 19 individuals attended interviews in 5 groups of size 6, 5, 4, 3 and 1 (Table 2). Inclusion criteria: individuals with a confirmed diagnosis of epilepsy, aged between 18–65. The exclusion criteria were learning disability or an inability to travel to interview locations.ResultsThe individuals in these group interviews were not 'epilepsy activists' yet they remained critical in extended discussions about the services encountered during their patient careers, wanting more information and advice about how to adapt to problems, particularly after initial diagnosis, more involvement in decision making, rapid access to expertise, preferably local, and improved communication between clinicians. A central concern was the tendency for concerns to be silenced, either overtly, or covertly by perceived haste, so that they felt marginalised, despite their own claims to own expert personal knowledge.ConclusionsUsers of existing services for epilepsy are critical of current systems, especially the lack of attention given to providing information, psychosocial support and the wishes of patients to participate in decision making. Any reorganisation of services for individuals with epilepsy should take into account these perceived problems as well as try to reconcile the tension between the distant and difficult to access expertise of specialists and the local but unconfident support of generalists. The potential benefit of harnessing information technology to allow better liaison should be investigated.

show abstract

Section: Discussionsupporting

confidence: 84%

Section: Introductionmentioning

confidence: 99%

A 'real puzzle': the views of patients with epilepsy about the organisation of care

Elwyn

Todd

Hibbs³

et al. 2003

BMC Fam Pract

View full text Add to dashboard Cite

show abstract

“…16,17 In many cases, the adverse effects of therapy represent more of a handicap than the seizures themselves. Epilepsy and AED therapy greatly affect the daily lives of patients.…”

Section: Methodsmentioning

confidence: 99%

Weight change associated with valproate and lamotrigine monotherapy in patients with epilepsy

Biton¹,

Mirza²,

Montouris³

et al. 2001

Neurology

218

135

View full text Add to dashboard Cite

show abstract

“…Terms such as "seamlessness," "smoothness," and "uninterrupted care" were used by researchers to describe the degree of connectedness between health care encounters, 14,57-60 but patients seem to experience continuity as feelings, either positively as security, 3 34,49 They may respond by seeking alternate care (including self-care), mistrusting their clinician, becoming noncompliant, or withdrawing from the formal care system. 54 …trust was linked to care coordination.…”

Section: Connectedness As Security and Confi Dence Not Seamlessnessmentioning

confidence: 99%

Experienced Continuity of Care When Patients See Multiple Clinicians: A Qualitative Metasummary

Haggerty

Roberge

Freeman

et al. 2013

The Annals of Family Medicine

206

261

View full text Add to dashboard Cite

PURPOSE Continuity of care among different clinicians refers to consistent and coherent care management and good measures are needed. We conducted a metasummary of qualitative studies of patients' experience with care to identify measurable elements that recur over a variety of contexts and health conditions as the basis for a generic measure of management continuity.METHODS From an initial list of 514 potential studies (1997)(1998)(1999)(2000)(2001)(2002)(2003)(2004)(2005)(2006)(2007), 33 met our criteria of using qualitative methods and exploring patients' experiences of health care from various clinicians over time. They were coded independently. Consensus meetings minimized conceptual overlap between codes.RESULTS For patients, continuity of care is experienced as security and confidence rather than seamlessness. Coordination and information transfer between professionals are assumed until proven otherwise. Care plans help clinician coordination but are rarely discerned as such by patients. Knowing what to expect and having contingency plans provides security. Information transfer includes information given to the patient, especially to support an active role in giving and receiving information, monitoring, and self-management. Having a single trusted clinician who helps navigate the system and sees the patient as a partner undergirds the experience of continuity between clinicians.CONCLUSION Some dimensions of continuity, such as coordination and communication among clinicians, are perceived and best assessed indirectly by patients through failures and gaps (discontinuity). Patients experience continuity directly through receiving information, having confi dence and security on the care pathway, and having a relationship with a trusted clinician who anchors continuity. Ann Fam Med 2013;11:262-271. doi:10.1370/afm.1499. INTRODUCTIONC ontinuity of care is the extent to which a series of health care services is experienced as connected and coherent and is consistent with a patient's health needs and personal circumstances.1 As patients increasingly receive care from multiple professionals and organizations, improving continuity of care has become a research priority. Although continuity of care is understood differently across health disciplines, an interdisciplinary review of concepts and measures of continuity of care found all disciplines would recognize 3 types of continuity. 1,2 Relational continuity is the therapeutic relationship between a patient and 1 or more clinicians that bridges episodes of care and provides coherence through clinicians' growing comprehensive knowledge of the patient. It is most valued in primary care and family medicine. Informational continuity ensures connectedness and coherence by the uptake of information on past events and is most emphasized in the nursing sciences.3-6 Management continuity refers to consistent and coherent management by different clinicians 263 CONT INUIT Y O F C A R E WIT H MULT IPL E CLINICIANSthrough coordinated and timely delivery of complemen...

show abstract

Quality of epilepsy treatment and services: the views of women with epilepsy

Cited by 22 publications

References 7 publications

A 'real puzzle': the views of patients with epilepsy about the organisation of care

A 'real puzzle': the views of patients with epilepsy about the organisation of care

Weight change associated with valproate and lamotrigine monotherapy in patients with epilepsy

Experienced Continuity of Care When Patients See Multiple Clinicians: A Qualitative Metasummary

Contact Info

Product

Resources

About