Do women with learning disabilities have mental health problems?

1. Do women with learning disabilities have mental health problems? Dr Laurence Taggart University of Ulster Contact: l.taggart@ulster.ac.uk Tel: 02870324362

2. Outline • Background of women with LD and mental health problems • Importance of examining this forgotten population • Staff perceptions of women with LD • Implications for practice, education, service development and further research

3. Do women in the general population have specific mental needs? Common psychiatric disorders observed in women (i.e. mood disorders, eating disorders, dementia and Alzheimer’s disease, pre-menstrual and Peri-menstrual Disorders, and Borderline Personality Disorder) Women are more likely to encounter certain psycho-social experiences leading to decrease in self-esteem and disempowerment (WHO, 2000, 2007) Women are more likely to present differently to primary and acute health services

4. Do women with LD have specific mental needs? • Having an LD is a risk factor (i.e. cog impairment, poorer coping and com skills) to develop a psychiatric disorder (Bouras & Holt, 2007) • However, women with LD have been seen as (Burns, 1993): • ‘Asexual’, • ‘Un-gendered’ • ‘Children’ • Not needing intimacy and sexual relationships • Not able to develop mental health problems • Nevertheless, having a LD and being female highlights a doubly forgotten population (Kohen, 2004, O’Hara, 2008, Taggart et al., 2008)

5. Importance of examining this forgotten population • Mental ill health in the non-LD population will double by 2020 (WHO, 2000, 2007) • More significant for women than men as they will live longer and are a large part of the caring force • People with LD are more likely to develop mental health problems (Bouras & Holt, 2007) • But what about women with LD?

6. Importance of examining this forgotten population • Traditionally mainstream services have been ‘gender blind’ although now there is growing awareness of gender sensitive psychiatric services • This new ‘enlightenment’, has also focused upon the mental health of women specifically with the publication of: • National Service Framework (DoH, 1999) • Into the Mainstream (DoH, 2002) • Mainstreaming Gender & Woman’s Mental Health (DoH, 2003) • Supporting Women into the Mainstream (DoH, 2006) • Women at Risk (DoH, 2006) • Creating A Gender Equality Scheme (DoH, 2007) • Equal Opportunities Commission (2007) • These documents stress the importance of listening to what these women with psychiatric disorders want

7. Importance of examining this forgotten population • Nevertheless, it can be argued that such rights have not transcended to women with a ‘LD’ • There is no mention of gender issues within ‘Valuing People’ (DoH, 2001), ‘Equal Lives’ (N. I.) (DoH, 2005) and ‘Vision for Change (ROI, 2006) • Services for PWLD have not been planned according to a gender sensitive framework • Therefore, is important in: • Understanding how such individuals can be supported to live in the community • In the development of gender sensitive interventions and services

8. Context for this study • Judith Trust Research call 2005 • Stage 1: Literature review (Taggart et al., 2008) • Stage 2: Interviews with 12 women with LD and psychiatric disorders in residential accommodation (Taggart et al., submitted) • Stage 3: Focus groups with hospital, community and residential staff (Taggart et al., submitted)) • Stage 4: ‘Predictors of hospital admission for women with learning disabilities and psychiatric disorders compared to women maintained in community settings’ (Taggart et al., 2009)

9. Stage 3: Staff perceptions and knowledge The aim of this study was to explore staffs’ knowledge and perceptions of working with women with LD and psychiatric disorders

10. Methodology • Design: Qualitative using focus groups • Sample: Eight focus groups with hospital, community and residential staff • Interview schedule: developed from the literature examining and practice: - Risk factors - Resilience factors • Newell & Burnard’s (2006) Thematic Content Analysis used to examine the audio transcripts

11. Findings: Risk factors • Two core trends were observed to have echoed throughout the transcripts: - Low self-esteem and - Disempowerment (WHO, 2000, 2007) • Six main themes identified as risk factors and subsequent sub-themes

12. Risk factors Having an LD and being female: Being different, stigma, devalued, vulnerable, exploitation, poor coping strategies

13. Risk factors Family up-bringing: dysfunctional families, parental psychiatric problems, ,negative role models, aggression, physical and sexual abuse, foster care Having an LD and being female: Being different, stigma, devalued, vulnerable, exploitation, poor coping strategies

14. Risk factors Family up-bringing: dysfunctional families, parental psychiatric problems, ,negative role models, aggression, physical and sexual abuse, foster care Having an LD and being female: Being different, stigma, devalued, vulnerable, exploitation, poor coping strategies Individual & societal expectations: being in arelationship, being married, children, lack of parenting skills, having your own home, your own job

15. Risk factors Family up-bringing: dysfunctional families, parental psychiatric problems, ,negative role models, aggression, physical and sexual abuse, foster care Having an LD and being female: Being different, stigma, devalued, vulnerable, exploitation, poor coping strategies Individual & societal expectations: being in arelationship, being married, children, lack of parenting skills, having your own home, your own job • Relationships, • marriage & children: • unstable relationships, being alone, • refusal to seek support, • loss of children

16. Risk factors Family up-bringing: dysfunctional families, parental psychiatric problems, ,negative role models, aggression, physical and sexual abuse, foster care Having an LD and being female: Being different, stigma, devalued, vulnerable, exploitation, poor coping strategies Individual & societal expectations: being in arelationship, being married, children, lack of parenting skills, having your own home, your own job • Relationships, • marriage & children: • unstable relationships, being alone, • refusal to seek support, • loss of children Domestic violence: under-reported, cyclical nature

17. Risk factors Family up-bringing: dysfunctional families, parental psychiatric problems, ,negative role models, aggression, physical and sexual abuse, foster care Having an LD and being female: Being different, stigma, devalued, vulnerable, exploitation, poor coping strategies Individual & societal expectations: being in arelationship, being married, children, lack of parenting skills, having your own home, your own job • Relationships, • marriage & children: • unstable relationships, being alone, • refusal to seek support, • loss of children Domestic violence: under-reported, cyclical nature Negative life events: substance abuse, lack of employment, education & meaningful structure, isolation/loneliness, bereavement, court

18. Findings: Resilient factors • Three core protective factors were identified:

19. Protective factors Being proactive: family, school, primary healthcare and LD services taking responsibility, parenting classes,

20. Protective factors Being proactive: family, school, primary healthcare and LD services taking responsibility, parenting classes, Community participation: promoting friendships, relationships, opportunities (i.e. education, employment, leisure,), developing coping strategies and social skills, ensuring safe places to live

21. Protective factors Being proactive: family, school, primary healthcare and LD services taking responsibility , parenting classes, Community participation: promoting friendships, relationships, opportunities (i.e. education, employment, leisure,), developing coping strategies and social skills, ensuring safe places to live Early recognition and mental health maintenance: staff recognition of problems, proactive screening, appropriate referral, education for all, addressing negative life events (i.e. counselling)

22. Discussion • These risk factors must be seen in their cumulative effect and not one specific risk factor will predict mental ill health • Not representative of all women: only women with LD and psychiatric disorders in residential care • Again limited staff interviewed • Few respondents reported issues regarding physical health (i.e. obesity, PMT, menstruation) and its relationship with mental ill health as risk factors • No gender sensitive psychiatric services operating in N.I. • Little referral onto non-LD gender services (i.e. Nexus, Well Women Clinics, Women’s Aid)

23. Implications • Staff can raise the profile of these women with LD and psychiatric disorders (i.e. clinical conditions, contextual background and clinical presentation) • Staff can be more proactive in the early recognition, assessment and treatment of the women’s risk factors (i.e. family/relationship/children issues, domestic violence, abuse, life events, structure, expectations) • Staff can be involved in promoting opportunities for the women to improve their self-esteem and empowerment • Potential for staff to develop inter-agency collaboration with women specific gender services (i.e. women only day centres/groups/therapy, women only wards, Nexus, Well Women Clinics, Women’s Aid)

24. Education • The development for staff education and training on women with LD and psychiatric disorders (pre/post reg) • Staff also working in other areas will require education and training around the specific needs of women with LD and psychiatric disorders (i.e. day-care, schools, employment) • This education/training should also be offered to mainstream mental health service (i.e. staff working in women only day-centres, mother and baby units, eating disorder units and forensic services) • Staff to educate women with LD about their risk factors and support these women to develop health promoting behaviours (i.e. physical health (PMT and menstruation), social support networks, develop relationships, being involved in education, employment and leisure opportunities)

25. Service Developments • The needs of these women will have to be clearly visible at the centre of each government’s LD and mental health strategy • Appropriate funding and resources also need to be made available • Greater emphasis upon promoting self-esteem and empowerment opportunities for these women • Facilitating women with LD to use mainstream gender sensitive psychiatric services • The development of single sex in-patient facilities

26. Further research • More evidence is required on the: - clinical conditions: prevalence/epidemiology, interplay of the biological, psychological and social causes - contextual background: factors that diminish, and also promote, self-esteem and empowerment - clinical presentation: how these women with LD and psychiatric disorders present themselves to primary healthcare, mainstream mental health and LD services • There is a significant need for women with LD to be heard and that the meaning they ascribe to their lived experiences acted upon • The development and delivery of innovative programmes targeted at improving the women’s self-esteem and empowerment (i.e. Wise Women: Tomorrow’s workshop)

27. Questions

28. References Taggart, L., McMillan, R. & Lawson, R. (2008): Women with and without intellectual disability and psychiatric disorders: an examination of the literature. Journal of Intellectual Disabilities, 12(3), 191-211. Taggart, L., McMillan, R. & Lawson, A. (2009): An exploration of the characteristics of women with learning disabilities and psychiatric disorders admitted into a specialist hospital. Advances in Mental Health in People with Learning Disabilities. IN PRESS Taggart, L., McMillan, R. & Lawson, A. (submitted) Staffs’ knowledge and perceptions of working with women with intellectual disabilities and psychiatric disorders. Journal of Intellectual Disabilities Research. Taggart, L., McMillan, R. & Lawson, A. (submitted) Women with intellectual disabilities: risk and protective factors for psychiatric disorders. Journal of Intellectual Disabilities.