What can young carers tell us about resilience?

1. Tony Cassidy Debbie Archibald Melanie Giles Dawn Harbinson Delia Cushway Louise Earley Tony McGurk What can young carers tell us about resilience?

2. Young carers – children who provide a substantial amount of care on a regular basis Level of care – surpassing the boundaries of what is considered developmentally appropriate Type of care – range across physical, material and emotional care Estimates of up to 50,000 young carers across the UK Defining the issue

3. The medical model, which originated in the early 1950s, is primarily concerned with the impact of ill-health and disability on families, including children. • The young carers perspective originated in the late 1980s and early 1990s and is concerned specifically with children who are care-givers within families where there is ill-health or physical or mental impairment. Rooted in a children’s and carers’ rights perspective which views children and carers as fulfilling distinct family and social roles, including being the main providers of care in the community. • The social model of disability dates back to the late 1970s and is primarily concerned with the rights and needs of disabled people and their experiences of ‘disabling barriers’ including discrimination and exclusion. • The family perspective is still evolving and becoming more clearly defined in service and policy responses to young carers. The family perspective has grown out of the debate between the rights of disabled people and the rights of children who care and is consistent with the principle of UK and Irish policies, emphasising prevention in a family context as opposed to protection. Four key perspectives on Young Carers (Becker et al, 1998)

4. Term coined by Boszormenyi-Nagy in 1965 in family therapy setting • Parentification is based on the systems model of the family – where each member performs roles which are interdependently and systemically related. Roles are fluid to an extent and parentification of the young carer occurs when they adopt a parental role. This usually happens when the recipient of care is a parent – but may occur in other situations where the parent is ineffective as a carer – the burden of responsibility too early has long term developmental implications – the focus is emotional care Parentification

5. Involves constructs such as ‘unethical parenting’ and ‘misapplication of parental authority’ Seen as transmitted intergenerationally Not limited to young carer but most obviously seen in that context Parentification (continued)

6. Jurkovic (1997) talks of 4 types: • Destructive parentification– violation of personal and family boundaries leading to exploitative or unethical relations • Adaptive parentification– support and fair treatment leading to positive outcomes • Non-parentification – identity not shaped by caretaking • Infantilization – boundary violation creates over dependence and underfunctioning Parentification (continued)

7. Recognised but largely ignored in research Absence may indicate a learning vacuum in modern families Provides a context for development of positive qualities of responsibility, nurturance, kindness Potential link with resilience and positive problem solving Adaptive Parentification

8. Are there positive developmental benefits of young caring? Question

9. Two groups - n=9 & n=8 Ages – 10-16 50 minutes, tape recorded Participants met individually with group facilitator to review experience Initial coding for major categories Study 1: Focus groups

10. Feeling different – “you just want to be a child” “they call us names because our mum or dad are different” Identity – “you get engrossed and don’t want the caring to go away” “if you don’t give the person your time you just feel lost” “my brother is in day care now – it’s like I’ve had everything took off me” Responsibility – “at school you’re thinking you’re not sure if they can cope on their own” “you need to be prepared in case something drastic happens””you don’t want to get paid to care” Themes

11. Relationship tension – “you don’t want to say your feelings because you might clash” “if you say you hate your brother it’s not like that cause you love them whatever happens” “you’re too busy to make friends” • Controllability – “you might never be able to live on your own” “you’re thinking will their health worsen, and you’re hoping it will get better” Themes (continued)

12. Talking about things they did to cope carers mentioned – “cooking a meal” “taking them on an outing” “making sure you’re around so you know they’re safe” While some did mention coping better when away from the situation there was a strong sense of the role itself being used to cope with feelings of guilt and distress Coping

13. N=108: Male= 43: Female= 65 • Age 12-18: Mean = 13.6 • recruited from a network of young carer support. • Families selected for inclusion on the bases that the child carer was living at home, attending full time education and caring for a family member with a physical illness or disability who was resident in the household. Study 2: Current young carers

14. Perceived Social Support Scale (Procidino & Heller, 1983) – 2 x 20 item scales – friends & family Adolescent Coping Scale – short form (Fryenberg & Lewis, 1993) –18 item The GHQ-12 – psychological distress / adjustment – Likert v GHQ scoring The Young Carer’s Perceived Stress Scale (YCPSS) (Cassidy et al, 2006) Measures

15. 47.2% cases – using conservative cut off – ‘normal’ range 15-30% Hierarchical Multiple Regression Analysis (HMRA) was used to identify predictors and build path models Analysis

16. Perceived burden .27 .39 -.57 Role Positives -.21 .16 .23 -.35 -.13 Burden Coping R₂=.40 .17 Care recipient -.18 -.59 .14 .25 -.14 Psychological Distress .17 .12 Support R₂=.15 R₂=.48 .21 -.14 .17 Disability

17. N=221: Male= 89: Female= 132 Age 11-16: Mean = 13.3 Time caring 0.5-8.0 years: Mean = 3.4 years Study 3: Current young carers

18. Adolescent Coping Scale- Short Form (ACS: Frydenberg and Lewis, 1993) • The Young Carer’s Perceived Stress Scale (YCPSS) (Cassidy et al, 2006) • The Perceived Social Support Scales (PSS-Fr and PSS-Fa Scales: Procidano and Heller, 1983) • The General Health Questionnaire (GHQ-12:Goldberg, 1972, 1978) • The Trait Emotional Intelligence Questionnaire for Children – Short Form (TEIQue-CF: Petrides & Furnham, 2006) Measures

21. N=862 (Males= 194; Females = 668 ) Mean age 29.6 Current carers = 585; p<.001 Started caring ranged 8-17 Mean=12.14 Time caring ranged 2.5-17 years Mean=11.7 Retrospective study young adults who had been young carers

22. The Brief Resilience Scale (Smith et al, 2008) • Parentification Scale (Sessions & Jurkovic, 1986) • Experiences in Close Relationships (ECR) (Brennan et al, 1998) • The Tendency to Give Social Support Scale (TGSS: Piferi, Billington and Lawler, 2000) • The General Health Questionnaire (GHQ-12:Goldberg, 1972, 1978) • The Reported Health Behaviours Checklist (Prohaska et al, 1985) • The Trait Emotional Intelligence Questionnaire – Short Form (TEIQue-SF: Petrides & Furnham, 2006) Measures

25. N=1311 (Males= 456; Females = 1227) • Mean age 25.1 • Young carers = 770 • Current carers = 769; p<.001 • Not carer / not parentified = 622 • Not carer / parentified = 291 • Carer / not parentified = 250 • Carer / parentified = 520 Retrospective study young adults

26. The Brief Resilience Scale (Smith et al, 2008) • Parentification Scale (Sessions & Jurkovic, 1986) • Experiences in Close Relationships (ECR) (Brennan et al, 1998) • The Tendency to Give Social Support Scale (TGSS: Piferi, Billington and Lawler, 2000) • The General Health Questionnaire (GHQ-12:Goldberg, 1972, 1978) • The Reported Health Behaviours Checklist (Prohaska et al, 1985) • The Trait Emotional Intelligence Questionnaire – Short Form (TEIQue-SF: Petrides & Furnham, 2006) Measures

31. Evidence of high level of distress among young carers – 47% cases Qualitative analysis identifies positive aspects of caring and heightened responsibility Resilience and emotional intelligence mediates the negative impact in young carers Experience of young caring predicts resilience and emotional intelligence Parentification impacts on distress, caregiving, resilience and emotional intelligence Conclusions

32. Don’t throw the baby out with the bath water Thank you  Final thought