Exploring the mental health and wellbeing of children and young people with long term conditions

Amy WoodhouseHannah Biggs

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

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:

Methodology

Method Response

Online survey 80 complete

Interviews and focus groups with young people aged 12-18

12

Interviews with professionals 18

Interviews with parents 2

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

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.

Survey: WEMWBSLooking 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

Survey: mental healthQ5 Have you ever been diagnosed with a mental health problem? (n=80) No. %

No 52 65Yes 18 23Prefer not to say 5 6Did not respond 5 6

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.

Survey: How does living with a long term condition make you feel?

% %

Tired 55 Helpless 23

Frustrated 51 Hopeless 20

Stressed 49 Like life is not worth living

15

Feel down / sad 44 Like hurting myself 11

Anxious 38 Out of control 11

Excluded 33 %

Angry 31 OK 24

Worried about the future 31 Strong 18

Scared 30 Proud 13

Lonely 29 In control 11

Isolated / alone 28 Hopeful 11

Uncertain 25 Happy 5

Survey: Statements about living with a long term conditionStatements (Strongl

y) Agree %

(Strongly)

Disagree %

My condition stops me from taking part in things I enjoy. 33 34

I am able to enjoy taking part in things as much as anyone else. 43 24

My condition makes me feel bad about the way my body looks. 35 29

I feel in control of my condition. 22 34

I get bullied because of my condition. 25 44

My condition makes me feel different from my friends. 51 17

My condition doesn’t impact much on my life. 22 46

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.”

Survey: seeking supportHow 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 58 21

Health professional e.g. Doctor / Nurse 57 20

Friend(s) 42 32

Other people with same or similar condition (face-to-face) 32 39

Other family member 30 44

Other people with same or similar condition (online) 29 41

Brother / sister 28 44

Boyfriend / girlfriend 26 31

Online support 25 31

Teacher 16 56

Youth worker / youth organisation 9 57

Helpline 5 61

Survey: support young people wantSupport 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.

“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.”

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

If you have any questions about the project please contact Amy or Hannah using the details below:

Amy WoodhouseEmail: awoodhouse@mentalhealth.org.uk Tel: 0131 243 3800

Hannah BiggsEmail: hbiggs@mentalhealth.org.uk Tel: 0131 243 3800