1. Mary O’Hara Dr Margaret Hodgins PhD Study: Department of Health Promotion National University of Ireland, Galway 4th April 2011 Contact Details: e.mail: mary.ohara@nuigalway.ie Tel:+353 91493684

2. School of Nursing & Midwifery The Aim of this session To define juvenile idiopathic arthritis To provide an overview of the study To discuss the concerns and fears of parents of children with juvenile arthritis

3. School of Nursing & Midwifery The aim of this study To explore the health related quality of life (qol) issues as perceived by young people aged between 12-18 years with juvenile idiopathic arthritis (JIA) in the Republic of Ireland.

4. School of Nursing & Midwifery Objectives To document the health related quality of life of young people with JIA. To analyze the impact of JIA and treatment on the young person’s well-being. To explore and evaluate the views of young people with JIA on the delivery of health care services in the Republic of Ireland. To give young people a voice in issues relating to their health care services.

5. School of Nursing & Midwifery What is childhood arthritis? Juvenile Idiopathic Arthritis (JIA) is an inflammation of one or more joints, that persists for more than 6 weeks and occurs in children under 16. No cause is currently known.. JIA is an umbrella term for many different forms of arthritis in children. Juvenile arthritis affects one in 1000 children (Gare 1998). It is an autoimmune disease. A disease of exclusion. Signs & symptoms include: persistent joint swelling, stiffness, pain, child may be limping, unpredictable disease, flare-ups, remissions –Goals of treatment: control inflammation with medications, –maintain range of movement and functions, – maintain normal motor development and –facilitate normal behavioural, psychosocial educational and vocational development (Emery 2004).

6. School of Nursing & Midwifery Methodology The driving factor in the type of methodology used in this research project was the research question of the project. What are the perceived health related quality of life issues of young people in Ireland with JIA? Sequential Exploratory Mixed Methods Study – qualitative dominant – each phase informed the next phase of the study Principles of naturalistic inquiry ‘Applied research’ - aimed to investigate the subject of quality of life of young people with arthritis with a view to obtaining new knowledge. It was undertaken for a practical purpose (Gerrish and Lacey 2006)

7. School of Nursing & Midwifery Quality of Life: JIA and Young People in Ireland – Sequence of the methodology 1 – START – Ethical Approval 2 Survey to Consultant Paeds and Rheums 3 Interviews with Young People 4 Questionnaire to Young People 5 Interviews with Parents 6 Interviews with Health Care Providers

8. School of Nursing & Midwifery Quality of Life: JIA and Young People in Ireland QoL of Young Person Questionnaire to Young People Interviews with Parents Interviews with Health Care Providers

9. School of Nursing & Midwifery Quality of Life: Juvenile Idiopathic Arthritis and Young People in Ireland Triangulation of data Questionnaire to Young People with JIA Interviews with Health Care Providers Interviews with Parents of Young People with JIA

10. School of Nursing & Midwifery Exploratory Interviews with Parents Ethics Sample Access Consent Face to Face semi-structured interviews Telephone semi-structured interviews Interviews taped and transcribed Content analysis

11. School of Nursing & Midwifery Findings Quality of Life Diagnosis Physical Care Medication Co-ordinating Care Constant vigilance Impact on Family life Siblings School Education Prospects Practical Difficulties Normalization Accommodation ‘Passing it off’ Socialization Teenagers Peers Pride Fortitude Forbearance Relationships Family planning Long Term Impact of Meds

12. School of Nursing & Midwifery Findings Where there were Specialist Nurses and a small designated familiar team - high praise Some young people advantaged: –by parents – ability to access resources –by supportive family network

13. School of Nursing & Midwifery In conclusion: Implications for Care Providers Need for more support for parents Need for more information about the disease – age appropriate Attitude: Keep the door open: need for co-ordination of services – liaison person The need for access to appropriate services – time appropriate The need for improved services: e.g. online prescriptions, free medications Need for young adult clinics – young people taking on full management of their care – a process – need a time of transition for young people and their parents

14. School of Nursing & Midwifery Cont. In conclusion Changing needs – need for flexibility – care needs to be adaptable. The need for a sense of inclusion, collaboration with carers. Appropriate education for health professionals, peers and carers

15. School of Nursing & Midwifery Acknowledgements: I would like to acknowledge and thank - All of the young people and their parents/families who participated in the research. All of the health care providers who participated in the research or who assisted in accessing sites. Dr Margaret Hodgins, Department of Health Promotion, NUI Galway School of Nursing and Midwifery NUI, Galway An Bord Altranais

16. School of Nursing & Midwifery References Britton,C. (2003) Kids with arthritis – a guide for families, Hove: CHOICES for Families of Children with Arthritis Emery, H. (2004) Pediatric rheumatology: What does the future hold, Archives of Physical Medicine and Rehabilitation, 85, 8: 1382-1384. Gare, BA. (1998) Epidemiology, Balliere’s Clinical Rheumatology, 12: 191-208. Gerrish, K. & Lacey,A. (2006) The Research Process in Nursing, (5 th ed), London: Blackwell Publishing

17. School of Nursing & Midwifery Appendix 1Seven categories American College of Rheumatology European League Against Rheumatism International League of Associations for Rheumatology Systemic arthritis –refers to children with arthritis of any number of joints +fever/14dys + rash generalized or generalized lymphadenopthy or enlarged liver or spleen or serositis Oligoarthritis – 4 or less joint affected during first 6 months Polyarthritis >4 joints affected in first 6 months Polyarthritis and Rheumatoid factor negative Polyarthritis and RF positive 5 or more joints affected during first 6 months of disease. RF detected on at least 2 occasions at least 3 months apart. Psoriatic arthritis, arthritis and psoriasis or as arthritis and at least 2 of the following, dactylitis, nail abnormalities, family history of psoriasis confirmed by a dermatologist in at least one first-degree relative. Enthesitis-related arthritis defined as arthritis and enthesitis or arthritis or enthesitis plus 2 of the following, sacroiliac joint tenderness, inflammatory spinal pain or both, HLA-B27, family history in first or 2 nd degree relative of medically confirmed HLA-B27 associated disease, acute anterior uveitis, onset of arthritis in a boy after the age of 8 years