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Exploring the mental health and wellbeing of children and young people with long term conditions Amy Woodhouse Hannah Biggs.

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Presentation on theme: "Exploring the mental health and wellbeing of children and young people with long term conditions Amy Woodhouse Hannah Biggs."— Presentation transcript:

1 Exploring the mental health and wellbeing of children and young people with long term conditions Amy Woodhouse Hannah Biggs

2 MHF history in this topic area Six years of work on the relationship between mental health and physical health –Living Better (2008-2011) –Peer support and long term conditions (2011 – 2013) –Mental health of young people with long term conditions (2014-) Several decades working with young people regarding support their mental health –Right Here –We’ve got 99

3 About the project Aims to explore the impact of living with a long term condition (LTC) on the mental health and wellbeing of children and young people (aged 12-18). Small scale mixed quantitative and qualitative research study. 2 day coproduction event with young people and service providers to identify innovative responses to addressing mental health needs. Implement up to 4 pilots to test approaches. Share learning nationally. Partners: Funders:

4 Methodology MethodResponse Online survey80 complete Interviews and focus groups with young people aged 12-18 12 Interviews with professionals18 Interviews with parents2

5 Project limitations Challenges to engaging young people in qualitative research: –new area working with young people with LTCs and building relationships take time Small sample sizes in research: –Tight inclusion criteria (funding restrictions) –Timescales –Recruitment routes / methods Self selective participants

6 Survey demographics Survey respondents had a range of long term conditions, with the most common ones being: Asthma (30%); Allergies (29%); Arthritis (25%); Diabetes (18%); Eczema (16%); and Chronic Pain (13%). 52% of respondents reported having 2 or more long term conditions. Over a third of respondents have had at least one of their conditions since birth. Respondents to the survey were from across the entire age range of 12 to 18. 60% of respondents were female with only 13% male and 3% transgender. The largest proportion (24%) of respondents live in Lothian, followed by Greater Glasgow and Clyde (13%). 69% of respondents stated that they were White Scottish or British.

7 Survey: WEMWBS Looking at individual respondents: 40% low wellbeing 49% moderate wellbeing 13% high wellbeing Of the 69 respondents who completed all 14 WEMWBS questions, in the last 2 weeks: 47% said that none of the time or rarely they have had energy to spare 43% said that none of the time or rarely have they felt good about themselves 41% said that none of the time or rarely have they felt confident 41% said that none of the time or rarely have they felt relaxed 34% said that none of the time or rarely have they felt cheerful

8 Survey: mental health Q5 Have you ever been diagnosed with a mental health problem? (n=80) No.% No 5265 Yes 1823 Prefer not to say 56 Did not respond 56 23% of respondents said that they had been diagnosed with a mental health problem at some point (compared to 10% of the general young person population). Depression and anxiety were the most common mental health diagnosis cited. Others mentioned included: suicidal thoughts, self harm, OCD, bipolar disorder, personality disorder.

9 Survey: How does living with a long term condition make you feel? % Tired55Helpless23 Frustrated51Hopeless20 Stressed49Like life is not worth living15 Feel down / sad44Like hurting myself11 Anxious38Out of control11 Excluded33% Angry31OK24 Worried about the future31Strong18 Scared30Proud13 Lonely29In control11 Isolated / alone28Hopeful11 Uncertain25Happy5

10 Survey: Statements about living with a long term condition Statements(Strongly) Agree % (Strongly) Disagree % My condition stops me from taking part in things I enjoy. 3334 I am able to enjoy taking part in things as much as anyone else. 4324 My condition makes me feel bad about the way my body looks. 3529 I feel in control of my condition. 2234 I get bullied because of my condition. 2544 My condition makes me feel different from my friends. 5117 My condition doesn’t impact much on my life. 2246

11 Themes from YP interviews (impact) “My condition is stopping me from doing things I would like to do.” “I definitely found out who my proper friends were. I was too unwell to leave the house which made it difficult to socialise. I had some good friends that would make an effort to come and see me when they could.” “Stressed because I’m falling behind with work.” “The condition basically put much of my life on hold. I could no longer go to school so missed 6th year, University had to wait and I couldn’t begin to think about careers.” “People are so ignorant about it. Apart from my family and a few friends, nobody else believes me i.e. bus drivers/ some shops / teachers. It's horrible & hurtful the comments & judgments they make.”

12 Survey: seeking support How likely are you to look for support from the following people or places in relation to your thoughts and feelings about your condition? (n=80) Very / quite likely % Unlikely / Never % Parent / carer 5821 Health professional e.g. Doctor / Nurse 5720 Friend(s) 4232 Other people with same or similar condition (face-to- face) 3239 Other family member 3044 Other people with same or similar condition (online) 2941 Brother / sister 2844 Boyfriend / girlfriend 2631 Online support 2531 Teacher 1656 Youth worker / youth organisation 957 Helpline 561

13 Survey: support young people want Support that young people would like that would help them live well and cope with the thoughts and feelings about your condition(s): To meet or talk to others people with the same condition (online / face-to-face). People to have a better understanding of their conditions. People to have a better understanding of the mental health impact of living with a long term condition. Early access to support for their mental health (before a crisis). Additional support (to allow respite for family). Age specific support.

14 “I would of liked some counselling or psychological support growing up. You only get support when you reach a crisis and even then you have to wait months.” “I have never been offered any mental health advice or help before I self harmed, I think this should be offered compulsory when you go to clinic appointments without having to ask.” “I think if the doctors and nurses try to understand the psychological side of coping with a life-long disease and the fact that people react badly to their condition because they have not adapted to it or they are still in the denial stage, will help myself and others a lot instead of us feeling ashamed of not coping well or frustrated with the lack of understanding and sometimes respect people give.”

15 Next steps This project Innovation Lab: Jan / Feb 2015 Project pilots: March – Sept 2015 Dissemination of findings: Oct / Nov 2015 Future work Rerun survey on bigger scale Identify research gaps / opportunities

16 If you have any questions about the project please contact Amy or Hannah using the details below: Amy Woodhouse Email: awoodhouse@mentalhealth.org.ukawoodhouse@mentalhealth.org.uk Tel: 0131 243 3800 Hannah Biggs Email: hbiggs@mentalhealth.org.ukhbiggs@mentalhealth.org.uk Tel: 0131 243 3800

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