1. The Psychological Wellbeing of Young Carers in Northern Ireland Alison Toogood Dr Teresa Rushe Queen’s University Belfast

2. Overview  Define young carers and their role.  Positive and Negative outcomes in caring at a young age.  Significant predictors of psychological health.  Overview of our research and conclusions.  Q&As

3. Definition “Young carers are defined as children and young people under 18 who provide, or intend to provide care, assistance or support to another family member. They carry out, often on a regular basis significant or substantial caring tasks and assume a level of responsibility that would usually be associated with an adult.” (Dearden & Becker, 2000)

4. Statistics 166,000 young carers identified in England alone. (Office for National Statistics, 2011) 3.6% of all children and young people up to 17 years are defined as young carers in Australia (Australian Bureau of Statistics, 2004) 9% of households in Northern Ireland are defined as having one or more people in the household with a long term health problem or disability. (NISRA, 2011)

5.  Many view their circumstances as ‘normal family life’  Others fear scrutiny and intervention from social services.  Stigma (Smyth, Blaxland, & Cass, 2011) Hidden Carers Helping vs Caring

6.  Domestic Care  Personal Care  Emotional Care  Financial/practical management  Household Man- agement  Sibling Care Caring Activities 6 Areas of Responsibility MACA –YC18 (Joseph, Becker, Becker, Regel, 2009)

7.  Education  Missed opportunities  Isolation  Distress  Poor health Negative Outcomes “Children who adopt adult-like caring responsibilities are at increased risk of adverse psychosocial outcomes” (Early & Cushway, 2002)

8. Positive Outcomes “ My confidence has shot through the roof [...] It’s also wonderful to know you have someone to turn to. If I ever need support or need to talk to the session workers about anything I know they’ll be there.” Rebecca, a Young Carer  Pride  Self-worth  Accomplishment  Skills for the future  Independence  Perceived Maturity

9. Significant predictors of psychological health  Demographic and caregiving context  Social Support / social connectedness  Style of Coping: poor coping vs good coping.

10. The current study 1. To explore the association between burden of care and psychological well-being. 2. To identify the significant predictors of good psychological health in this group?

11. Methods Caregiving Context Variables Who is being cared for n% Mother + 1 ( father or sibling) 419.0 Mother 419.0 Father 523.8 Sibling 628.6 Illness or Disability Physical 947.4 Other (mental, psychological, developmental disorder) 1052.6 Age Started Caring < 10 years 1052.6 >10 years 947.4 Choice in Caring Not all, very little 838.1 A lot of choice/free to choose 1361.9 Duration of Caregiving < 3 years 630.0 >3 years 1470.0 Duration of Illness/disability < 3 years 315.8 >3 years 1684.2 Demographic Variables n % Gender Female 1568.2 Male 731.8 Currently in Education Primary 622.7 Secondary 1568.2 Tertiary 14.5 None 14.5 Family Structure Both parents 1676.2 Lone parent family 523.8 Siblings Has siblings 2095.5 No siblings 14.5 M (SD)Range Age of Sample (years) 13.59 (2.24) 10 -17 Household size 5.80 (1.91)2-10 Number of siblings 2.90 (1.51)0 - 7

12. Measure of psychological health  I am usually on my own. I generally play alone or keep to myself.  I worry a lot.  I try to be nice to others. I care about their feelings.  I am helpful if someone is hurt, upset or feeling ill. No of Responses Range of Scores No. of Responses Within the defined Range Total Difficulties Score (SDQTOT) Normal 0 - 15 Borderline 16 – 19 Abnormal 20 - 40 Total Difficulties210 - 401146 Mean Score 13.81 % of sample 52.419.028.6 Normal 6 -10 Borderline 5 Abnormal 0 - 4 Prosocial Score (SDQPS) 210 - 101830 Mean Score 8.05 % of sample 85.714.30 Strengths and Difficulties Questionnaire (SDQ)

13. Predictors of psychological health  I just have to get away  I feel sick  My mind just goes blank  I just can’t get myself to face the problem  Range of scores 27 – 81  X= 47.42 (Sd =19.24) No of Responses Range of Scores No. of Responses Within the defined Range Low 1 - 9 Moderate 10 - 13 High 14 - 17 Very High 18+ MACA Score 220 - 362587 % of sample 922.736.431.8 Range of Scores 8 -24 Mean Score 14.9 Burden of Care (MACA –YC18) Coping (Response to Stress Questionnaire)

14. What are the significant predictors of psychological health in this group ?  Significant negative correlation between burden of care and psychological difficulties  Significant positive correlation between burden of care and pro-social behaviour Correlation Analysis Burden of Care Psychological Difficulties Score Prosocial Score Burden of Care Pearson Correlation 1 -.510 *.623 ** Sig. (2-tailed).018.003 Total Difficulties Score Pearson Correlation -.510 * 1-.559 ** Sig. (2-tailed).018.008 Prosocial Score Pearson Correlation.623 ** -.559 ** 1 Sig. (2-tailed).003.008 Burden of Care

15. Coping  significant positive correlation between coping and psychological difficulties  significant negative correlation between coping and burden of care Correlation Analysis Burden of Care Psychological Difficulties Coping Burden of Care Pearson Correlation 1-.510 * -.542 * Sig. (2-tailed).018.011 Psychological Difficulties Pearson Correlation -.510 * 1.767 ** Sig. (2-tailed).018.000 Coping Pearson Correlation -.542 *.767 ** 1

16. Does coping mediate the relationship between burden of care and psychological health? Multiple Regression Analysis ModelUnstandardized Coefficients Standardized Coefficients tSig. BStd. ErrorBeta 1 (Constant) 27.6045.626 4.907.000 Burden of Care -.909.363-.508- 2.503.022 2 (Constant) 4.0867.501.545.593 Burden of Care -.230.328 -.128 -.702.492 Poor Coping.287.075.697 3.806.001 a. Dependent Variable: Psychological Difficulties  Burden of care explains 26% of variance in psychological health.  Adding coping to the model explains 60% of variance in psychological health.

17. Conclusions Coping mediates the relationship between burden of care and psychological health. It is likely that the young carers in this sample report good psychological health as a result of support they receive at their Young Carers’ Support Group.

18. Impact of Study  Equipping young carers with good coping skills will promote good psychological health.  Research shows that good coping skills include problem solving skills, positive thinking and asking for help.  Young Carer organisations can include coping skills as part of their support programme.

19. The Psychological Wellbeing of Young Carers in Northern Ireland Alison Toogood Dr Teresa Rushe Queen’s University Belfast atoogood01@qub.ac.uk