A randomised controlled trial of a programme for parents and full-time carers of young people with self-harm or suicidal behaviour Carole Boylan, Dr. Sophia Morgan, Martha Noone, Andreé Carthy, Sinead Crowley, JulieAnn Lyons, John Butler, Prof. Carol Fitzpatrick, Eóin Rickard, Dr. Suzanne Guerin. Temple St., Dublin 1, Ireland www.cuh.ie
Overview • Development of SPACE Programme • Programme content • Pilot evaluation • Evaluation using RCT Temple St., Dublin 1, Ireland www.cuh.ie
SPACE Programme Support for Parents and Carers of young people with self-harm or suicidal behaviour. • Group programme • Introductory session • Six sessions + booster • Criteria Temple St., Dublin 1, Ireland www.cuh.ie
Context • Developed by the Liaison Mental Health Team (LMHT) Children’s University Hospital, Temple St., Dublin. • Increasing numbers of referrals to the Emergency Department . Temple St., Dublin 1, Ireland www.cuh.ie
LMHT • Established in 2002 • Psychiatrist, Mental Health Social Worker, Clinical Nurse Specialist • Assessment in ED • +/- admission • Onward referral Temple St., Dublin 1, Ireland www.cuh.ie
Referrals from ED to Liaison Mental Health Team 2002 2003 2004 2005 2006 2007 2008 Total 39 71 83 62 67 74 160 2009 2010 2011 2012 2013 2014 2015 Total 152 149 176 223 266 309 284 Temple St., Dublin 1, Ireland www.cuh.ie
Context • Parents requested support for themselves. • Decision made to hold Focus Group with parents and carers to hear their views on what support was needed. Temple St., Dublin 1, Ireland www.cuh.ie
Focus Group • Greatly welcomed • Main themes: – SUPPORT, SUPPORT, SUPPORT ! – Information – Re-establishing family structures/boundaries – Handling further threats or incidents of self-harm – Parenting adolescents • Other themes: School, bullying, stigma, Internet Temple St., Dublin 1, Ireland www.cuh.ie
Parents said… • ‘...when I left A/E I had nowhere to go...no idea what to do, where to go, how to get help...’ • ‘…knowing other people have the same situation really does help…the relief of knowing I’m not the only one…’ • ‘...you’re just lost…’ ‘…the biggest thing is the isolation, terror and fear…it’s a very harsh journey…’ • ‘…the first thing you do as a parent is blame yourself...is it my fault…’ ‘…feeling you’re no good as a parent…a failure...’ • ‘ …angry towards her… how dare you…its upsetting the whole house…’
Parents said… • ‘… how can I help my child…’ • ‘…not being able to read what she’s thinking…’ • ‘…to regain what you had before…’ • ‘…reading into everything for fear that you’ll miss something …regain confidence…’ • ‘…not knowing how she is going to react…without giving into her…’
SPACE Programme content – Support – Information – Parent-Child Communication – Parenting – Managing SH Temple St., Dublin 1, Ireland www.cuh.ie
What is a session like? 7.30pm-9pm • Tea and coffee • Welcome • Brief discussion about ideas from last week • Introduction of topic for this week ( video, slides etc) • Small group discussion • Get together in the larger group • Idea for next week.
Session headings Information Meeting Session 1: Information about the SPACE programme and SH in young people, Working Things Out stories Session 2: Depression and self-harm in young people: How can parents help?Working Things Out stories. Looking after yourself Session 3: Parenting adolescents: communication, verbal/non verbal, press the pause button, listening Temple St., Dublin 1, Ireland www.cuh.ie
Session headings Session 4: Communication, positive attention avoiding and dealing with Session 5: Looking after yourself as a parent, Vignettes, Normal Adolescence Session 6: Keeping family life going Booster session: Review of SPACE and useful resources Temple St., Dublin 1, Ireland www.cuh.ie
Aims of SPACE Programme Primary: Improvement in parents’ mental wellbeing Improvement in parents’ social support Secondary: Improvement in family communication Improvement in child mental health Improvement in parenting satisfaction Temple St., Dublin 1, Ireland www.cuh.ie
Pilot evaluation • Uncontrolled trial • 46 parents • Standardised Questionnaires before, after & 6 month F/U. Temple St., Dublin 1, Ireland www.cuh.ie
Conclusions from pilot • Parents’ general well -being improved (GHQ) • Parents felt more supported (MSPSS) • Parenting satisfaction improved ( KPS) • Child mental health improved ( SDQ ) Temple St., Dublin 1, Ireland www.cuh.ie
But...... Could improvements be due simply to the passage of time? ........RCT needed...... Temple St., Dublin 1, Ireland www.cuh.ie
RCT Measures • General Health Questionnaire ( GHQ 12 ) • Multidimensional Scale of Perceived Social Support ( MSPSS ) • Strengths & Difficulties Questionnaire ( SDQ ) • McMaster Family Assessment Device ( FAD ) • Kansas Parenting Satisfaction Scale ( KPS ) Temple St., Dublin 1, Ireland www.cuh.ie
RCT Method SPACE Information Night (n = 130; parents only) Baseline Assessment – Time 1 GHQ, MSPSS, KPS, SDQ, FAD, Demographic Questionnaire Random Allocation SPACE (n = 74) WLC (n = 56) Session 6 – Time 2 6/7 Weeks Later – Time 2 (n = 52) (n = 40) Booster Session – Time 3 SPACE Session 1 – Time 3 (n = 35) (n = 34) Temple St., Dublin 1, Ireland www.cuh.ie
Parent profile Temple St., Dublin 1, Ireland www.cuh.ie
Parent profile • GHQ 12 > 3 indicating ‘ caseness ’ 112/130 ( 86%) • MSPSS < 65 indicating ‘poorly supported’ 80/130 ( 62%) • Child SDQ > 17 indicating ‘in clinical range’ 95/130 (73%) Temple St., Dublin 1, Ireland www.cuh.ie
Child profile 70 45 41 61 40 37 Frequency of SH Type of SH 60 35 30 50 25 40 20 15 30 9 10 7 4 20 5 2 11 9 8 0 10 0 Once Twice Three Four+ times times Temple St., Dublin 1, Ireland www.cuh.ie
Results GHQ 12 Significant improvement in GHQ 12 ( p = .000) in SPACE completers Time 1 to Time 2 Improvement maintained at Time 3 Significant difference between SPACE and WLC completers.
Results MSPSS Significant improvement in social support in SPACE completers from T1 to T2 ( p = .008) but no difference between groups at follow- up.
Results Child Strengths & Difficulties SPACE completers rated their children’s mental health as significantly improved ( p = .008) from Time 1 to Time 2. No significant improvement in WLC. SDQ scores continued to fall from T2 to T3 in both groups.
Results KPS & FAD • Parenting Satisfaction Significant improvement over time in both groups. No difference between groups. • Family Communication Scores are generally stable across time for both groups. Temple St., Dublin 1, Ireland www.cuh.ie
Limitations • High attrition rate • Some of the parents were self-referred, some referred by other services. Temple St., Dublin 1, Ireland www.cuh.ie
Conclusions • Most help-seeking parents of children with self-harm or suicidal behaviour have poor mental well-being, poor perceived social support, & rate their child’s difficulties as being high Temple St., Dublin 1, Ireland www.cuh.ie
Conclusions Compared with a WLC group, parents who complete the SPACE programme: • have significantly greater improvements in their mental well being • describe their children’s mental health as significantly improved. These gains are maintained at follow-up. • perceive their social support as significantly improved during the programme. Temple St., Dublin 1, Ireland www.cuh.ie
Conclusions The SPACE Programme may be a beneficial means of support to parents of young people with self-harm and suicidal behaviour, and may indirectly provide support to their young people Temple St., Dublin 1, Ireland www.cuh.ie
Reference • Morgan et al.(2013) Parents of young people with self-harm or suicidal behaviour who seek help – a psychosocial profile, Child and Adolescent Psychiatry and Mental Health, 7:13. • Power et al.(2009) A pilot study evaluating a support programme for parents of young people with suicidal behaviour, Child and adolescent psychiatry and mental health, 14:41:51 Temple St., Dublin 1, Ireland www.cuh.ie
Thank you to the SPACE Programme funders Fundraising Dept. Children’s University Hospital, Temple St., Dublin. 3 Ts Charity. Electric Aid. Temple St., Dublin 1, Ireland www.cuh.ie
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