Mental Health Care Provision for People with Epilepsy: An Exploratory Analysis

Ms Majella Mc Carthy, Ms Louise Bennett, Prof. John Wells & Dr Michael Bergin. Department of Nursing & HealthcareWaterford Institute of Technology

Background • Epilepsy affects more than 6 million people in

Europe with recent projections for Ireland identifying more than 37,000 cases.

• Epilepsy is second only to stroke as the most common neurological condition in Ireland.

• Despite its prevalence, epilepsy remains a much misunderstood and often stigmatised condition.

(Epilepsy Ireland 2014).

Epilepsy and Mental Health• Epidemiological data suggest that 20-30% of people with epilepsy

suffer from mental health problems (Kessler et al. 2012)

• 8-fold increased risk of developing psychosis (Clancy et al. 2014)

• Depression and anxiety are reported to be the most prevalent comorbid mental health problems associated with epilepsy (Gaitatzis et al.2004; Tellez Zenteno et al.2007)

• Approx 4.6% of service users of psychiatric inpatient services have epilepsy (Mental Health Commission, 2011)

• Many people with epilepsy suffer from mental health problems; however the needs of such people in receipt of mental health care provision remain poorly understood and are under researched in Ireland.

Study Aim & ObjectivesAim

• To explore and analyse mental health care provision for people with epilepsy attending the Mental Health Services.

Objectives • To analyse the views of service users and service providers on current

mental health care provision.

• To identify and analyse positive and negative experiences (emotionally significant points), from the perspective of both service users and service providers as these relate to the structures and processes of Irish mental health care provision.

• To make recommendations in relation to health policy and practice for the future development of mental health services for service users with epilepsy.

Methods • This study adopted an Experienced Based Co-Design (EBCD)

approach and comprised of two separate phases; (1) the discovery phase and (2) the co-design phase.

• Phase 1 incorporated In-depth interviews with people with epilepsy (n=12) in receipt of mental health care provision, and service providers (n=13) working within the Mental Health Services.

• Phase 2 will involve a joint co-designed focus group discussion with service users and service providers.

• Ethical approval was granted by Waterford Institute of Technology and University Hospital Waterford Research Ethics Committees.

• Inclusion/Exclusion Criteria

EBCD

Fig 1: The Experience Based Co-Design Cycle – (Bate & Roberts 2007)

Emerging Themes

•Views on Mental Health Care Provision •Sensitivity•Vulnerability•Stigma

▫Social Stigma ▫Detachment (Internalised Stigma)

Views on Service Provision

• Service users positively credited service providers for their role in the provision of mental health care for people with epilepsy: “They used to treat me like a king up there” (SU2; M;53).

• Service provision leading to increased quality of life: “I used to have a croquet foot [because of epilepsy] which prevented me

from walking at times but now since they changed my medication I don’t have that anymore” (SU3; M63)

• Service providers role in the provision of mental health care was described as therapeutic, recovery focused and patient centred: “He would ring me if any little thing happened or would tell me to get in

touch with him if any little change happened you know, follow up job” (SU2; M;53)

“I like the whole essence you know especially working with vulnerable patients in these services and seeing them getting healthier with the passage of time” (SP3; SO)

Views on Service Provision• Service providers felt that overall they very responsive to service user

needs: “I think what really shapes a persons overall experience is… if they

are in a crises or in distress they can ring and are put through to someone who is going to say ‘yes I can help you’ or offers a range of options… to know someone is available to them…that feeling...that’s what people seem to be most happy with” (SP4; CP)

• Overall, there was a sense of empowerment and equal partnership between service users and service providers:

“I have more of a relationship with my patients, that’s the beauty of this work and that’s what I love about working here… you get to know your patients and you get a feel for how they are doing” (SP2, SO)

• A minority felt disempowered: “People on the other side of the table vs people with problems

upstairs” (SU1; F;43)

Sensitivity • Lack of understanding of ‘what it is like to be a

person with epilepsy with mental health problems’ (SU10;F49)

• Epilepsy care within mental health services:▫ greater tendency towards physical aspects of care

provision over psychosocial aspects of their epilepsy: “People with epilepsy are provided with the same

mental health services that everyone else is provided with so they’re not signaled out in any way… from a medical point of view we are more careful with them because of the combination of medications their on” (SP4; CP)

Sensitivity • No specific care planning, intervention and/or support

outlined for epilepsy care within mental health services: “Epilepsy, in terms of an illness, the interventions and the

supports are not there, it is not matched properly with other medical conditions” (SP6; CNUM)

• Wider needs in the context of epilepsy are not fully met:

“I think anything with a physical root isn’t taken as seriously as maybe it should, epilepsy is just one” (SP7;CNUM)

• Service users with epilepsy within mental health services may be passive recipients of care.

Vulnerability • Service users experienced vulnerability within wider society – for

example, through a lack of basic education, knowledge and life skills, lack of family support and a diagnoses of epilepsy: “There are a lot of vulnerable people out there and there is a lot of people

out there waiting to get vulnerable people you don’t come equipped for this type of thing… sometimes it’s too late (SUI; F48)

• Service providers regarded service users being vulnerable to injury due to the unpredictable nature of their seizure activity: “…epilepsy is one of the few conditions where you do lose control and

someone having a seizure is very vulnerable and it can be dangerous…” (SP6, CNUM)

• Service users can be more vulnerable to injury where family/carer and/or social support is poor: “he was found at the bottom of the stairs…[after having a seizure]… and

they believe he was there for several days” (SP5, CNUM).

Vulnerability • Service users did not describe themselves as vulnerable within the

mental health services.

• Psychotherapy, for example CBT was credited for instilling a sense of ‘street life education’ amongst service users who felt particularly vulnerable within society: “when you go out into the real world that’s one thing you are not

trained in... street life education… It should be considered [for people] on how to handle relationships and themselves (SUI; F48).

• Psychotherapy was linked to improving cognition and mental well-being of service users and helped one particular service user to control aggression and to analyse situations: “I wouldn’t be as quick to fly off the handle and fight with people

and I will let things go over my head, there’s no point to it [fighting] you don’t achieve anything” (SU11;M52)

StigmaTwo types of stigma identified:

(i) Social stigma(ii) Internalised stigma

• Greater impact of stigma from wider society as opposed to mental health services: People with epilepsy were described by wider society as ‘vermin’ and ‘drug addicts’.

• Social Stigma was described by service users in the context of their epilepsy: “He can’t even look at me straight in the face, you can see that he

doesn’t want me in the library, if he was able to have anything on me he would exclude me from the library” (SU8; M56)

• Social stigma was described by service providers in the context of mental health:

“Just even for ourselves, you could be sitting in the pub having a drink with the lads [service users] and you would hear ‘ooh they have been in there [mental health service] oh terrible place that’, it’s awful” (SP12;CNUM)

Internalised Stigma

• Detachment/Dissociation – associated with mental health problems and epilepsy:

“I was diagnosed with borderline personality disorder, and in my own words – there is the world, I’m sitting here looking in at it, it’s a jigsaw and I was the piece that doesn’t fit in there – I have never found that I have fit in there” (SU11 M;52)

• Denial and dissociation from a diagnoses of epilepsy: “Well they came up with epilepsy after running every test in

the book, but they never really found a cause for it” (SU2, M;53)

• Impact of stigma on people with epilepsy and mental health problems may be more severe than those with epilepsy or mental health problems alone.

Discussion

•Irish mental health services need to be more aware and sensitive to their understanding of the needs of men and women with epilepsy that engage such services.

•Establishing greater collaborative links with The National Epilepsy Care Programme (NECP) may offer a more sensitive approach for mental health care provision.

Recommendations for future policy and practice• Greater awareness of the wider impact of epilepsy required within

mental health services:▫Improve training and education of health care professionals

• Increase community engagement and establish a network of support for people with epilepsy in receipt of mental health care:

▫More involvement with families, carers and community services; to increase support and promote community engagement amongst people with epilepsy

• Strengthen the capacity of current mental health services to establish greater collaborative links to the NECP and other agencies.

Questions

Contact Details: Majella Mc Carthy (Research Assistant)Email: memccarthy@wit.iePhone: 051 302695