SPACE Supporting Parents and Carers The Space Programme Carol Fitzpatrick St. Frances’ Clinic Children’s University Hos

1. SPACE Supporting Parents and CarersThe Space ProgrammeCarol FitzpatrickSt. Frances’ ClinicChildren’s University Hospital, Temple St. Dublin.

2. Development of a programme for parents/carers of young people with suicidal behaviour. Deliberate Self-Harm Team, St. Frances’ Clinic, Children’s University Hospital, Temple St., Dublin.

3. OVERVIEW • Background • Innovative approach undertaken • Current pilot programme • Preliminary Results

4. SERVICE CONTEXT • Children’s University Hospital, Temple St.– tertiary referral teaching paediatric hospital in city centre, catchment area covering all of North Co. Dublin. • Marked increase in number of children & adolescents presenting to A&E with suicidal behaviour over past decade.

5. SUICIDAL BEHAVIOUR • 258 presentations with suicidal behaviour in 5 year period 2002 – 2006. • Covers a spectrum of presentations, including overdoses, attempted hanging, strangulation, cutting, suicide threats, suicidal ideation.

6. DSH Presentations

7. Nature of DSH

8. SUICIDAL BEHAVIOUR AND THE FAMILY • Impact of suicidal behaviour on family/parents/carers : • Very little research on this. • Research has focused on suicide survivors: isolation; frustration; anger; fear; confusion; apprehension and blame. • Association between suicidal behaviour in young people and : • family dysfunction, disengagement and dissatisfaction; marital discord; separated/divorced parents; parental hx of affective disorders and alcohol/substance misuse; parent-child relationship difficulties

9. AIMS OF PROJECT • To develop and evaluate a programme for parents / carers of young people with suicidal behaviour. • Parents / carers to be directly involved in programme development and evaluation

10. FOCUS GROUP MEETING Aim: Identify needs of parents/carers whose children have self-harmed. Ascertain what they felt should be included in programme. Recruitment: • Letters & leaflets sent to i) Parents (SFC)-(64), ii) Residential Centres (7), iii) CAMHS across Dublin (25), iv) Family Support Centres (10) • Total : 106 • Visit to CAMHS teams & Family Centres Inclusion Criteria: • Parents & Carers. • Children 16 years and under. • DSH episode; suicidal ideation/thoughts; concerns around DSH. • Linked to service (treatment of child).

11. FOCUS GROUP MEETING Attendance: • 25 people (15 parents, 10 carers) • DSH Team • Stenographer (Research Component) Structure: • Intro/welcome • Small group discussion (5 groups) • Feedback to larger group Group Discussion • Three key questions; • Do you think parents/carers would be helped by taking part in a group specifically for them? • What areas do you think the programme should address? • What would you like to gain/learn from participating in such a programme?

12. Focus Group Findings Outcome: Common ideas/themes emerged among groups. Main need: Support for parents! Atmosphere: Supportive/Relief/Hope

13. THEMES- NEEDS IDENTIFIED • Support • Feelings • Parenting • Information & statistics • Services • Family • School • Stigma • Practicalities of DSH Episode • Beliefs re. DSH • Internet

14. THEME-Support • Support:emerged as the most central theme. i) Need for Support: to help cope with impact self-harm has on their lives. ‘...if there’s one thing this group could provide it’s support...’ ii) Lack of Support and Services: they described a lack of available services and support for all those impacted by DSH. ‘...when I left A/E I had nowhere to go...no idea what to do, where to go, how to get help...’ iii) Benefits of Peer Support:learning from each other; supporting one another; and ‘normalising’ their experiences. ‘…knowing other people have the same situation really does help…the relief of knowing I’m not the only one…’

15. THEME – Feelings • i) Isolation: theyfelt overwhelmingly alone in coping with their problems, ‘...you’re just lost…’ ‘…the biggest thing is the isolation, terror and fear…it’s a very harsh journey…’ • ii) Fear/Panic‘…terror and fear…’ ‘…It’s really really scary…’ • iii) Guilt:admitted to blaming themselves, and feeling ashamed that this had happened to their child. ‘…the first thing you do as a parent is blame yourself...is it my fault…’  • iv) Low self-esteem / lacking in confidence: …feeling you’re no good as a parent…a failure...’ • v) Frustration/Anger:Not only towards the services, but directed at their child. …angry towards her… how dare you…its upsetting the whole house…’

16. THEME –Parenting • Communication:how to help their children express feelings ‘…not being able to read what she’s thinking…’ ii) Discipline: ‘…how to discipline… not knowing how she is going to react…without giving into her…’ iii) Parenting Adolescents: ‘…how can I help my child deal with slagging …the fallout…teenagers…’ v) Re-building relationships:a sense that self-harm had ruined their previous relationship with their child, and how to regain this. ‘…to retain what you had before…’ v) Re-gaining confidence as a parent:‘over-analysising /reading into everything for fear that you’ll miss something …regain confidence…’

17. PARENTS PROGRAMME – ‘SPACE’ Content: Based on the themes identified at Meeting. • Support • Information on DSH • Parent-Child Communication • Parenting Adolescents • Managing an episode of DSH Audiovisual; powerpoint presentations; small and large group discussions; handouts; tea and coffee break. Structure: Run over 8 weeks, one evening per week, 7.30 – 9pm Recruitment: i) SFC database ii) CAMHS & Family Centres referrals

18. PARENTS PROGRAMME – ‘SPACE’ Content: Weeks 1,2 Information about suicidal behaviour in young people ( Lifestyle and Coping Survey, National Suicide Research Foundation ) Weeks 3,4 Parent / adolescent communication, Coping with family issues Weeks 5,6 Depression in young people, dealing with ongoing suicidal behaviour Weeks 7,8 Useful services, Looking after yourself

19. PARENTS PROGRAMME – ‘SPACE’ Process Welcome Feedback re previous week – large group discussion Topic for this week Small group discussion*** Thought for the week

20. RESEARCH – SERVICE EVALUATION Proposed Outcomes: • Provide social support • Reduce levels of parental stress • Improve communication & problem-solving abilities between parents and their child. • Deliver a service which parents find beneficial and which enables them to achieve their own defined goals. Methodology • Ethics Committee approval. • Standardised Questionnaires before, after & at 6 month follow-up. • Voluntary participation & Informed consent. Measures: • General Health Questionnaire; Parent Stress Scale; Strengths & Difficulties Questionnaire; Multidimensional Scale of Perceived Social Support; Behaviour & Goals Scale; McMaster Family Assessment; Kansas Parenting Satisfaction Scale

21. RESEARCH – SERVICE EVALUATION • Pre and post data available for 14 participants who took part in first programme

22. PRELIMINARY RESULTS

23. Future • Second programme just finished; third programme October to November 2007 • Plans to run two programmes per year on an ongoing basis. • Recruitment of parents not linked to services?? • Complete evaluation

24. Acknowledgements • Fundraising Dept. Children’s University Hospital, Temple St. • Health Promotion Dept., HSE Northern Area.