What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

Health and Social Care in the Community

Volumn 18, Issue 1, 2010, Pages 21-29

  Iles, Nicola ^a   Lowton, Karen ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Adolescence; Cystic fibrosis; Family support; Transition

Indexed keywords

ADOLESCENT; ADULT; ADULT CHILD; ARTICLE; ATTITUDE TO HEALTH; CAREGIVER; CYSTIC FIBROSIS; DISEASE MANAGEMENT; FEMALE; HUMAN; MALE; ORGANIZATION AND MANAGEMENT; PARENT; PATIENT CARE; PSYCHOLOGICAL ASPECT; SOCIAL SUPPORT; SOCIOLOGY;

ADOLESCENT; ADULT; ADULT CHILDREN; ATTITUDE TO HEALTH; CAREGIVERS; CONTINUITY OF PATIENT CARE; CYSTIC FIBROSIS; DISEASE MANAGEMENT; FEMALE; HUMANS; MALE; PARENTS; SOCIAL SUPPORT; SOCIOLOGY, MEDICAL; YOUNG ADULT;

EID: 73149116816     PISSN: 09660410     EISSN: 13652524     Source Type: Journal    
DOI: 10.1111/j.1365-2524.2009.00871.x     Document Type: Article

References (33)

1. Badlan K. (2006) Young people living with cystic fibrosis: an insight into their subjective experience. Health and Social Care in the Community 14 (3 264 270.
2. Braun V. Clarke V. (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77 101.
3. Cappelli M., MacDonald N.E. McGrath P.J. (1989) Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. Children's Health Care 18 (4 218 224.
4. Conway S.P. (1998) Transition from paediatric to adult-orientated care for adolescents with cystic fibrosis. Disability and Rehabilitation 20, 209 216.
5. Conway S.P., Morton A.M., Oldroyd B., Truscott J.G., White H., Smith A.H. Haigh I. (2000) Osteoporosis and osteopenia in adults and adolescents with cystic fibrosis: prevalence and associated factors. Thorax 55, 798 804.
6. Coyne I.T. (1997) Chronic illness: the importance of support for families caring for a child with cystic fibrosis. Journal of Clinical Nursing 6, 121 129.
7. DeLambo E.D., Levers-Landis C.E., Drotar D. Quittner A.L. (2004) Association of observed family relationship quality and problem-solving skills with treatment adherence in older children and adolescents with cystic fibrosis. Journal of Pediatric Psychology 29, 343 353.
8. Department of Health (2004) National Service Framework for Children, Young People and Maternity Services. Department of Health, London.
9. Department of Health (2006) Transition: getting it right for young people. Improving the transition of young people with long term conditions from children's to adult health services. Department of Health, London.
10. Dimond B. (2005) Legal Aspects of Nursing. Pearson Longman, London.
11. Dodge J.A., Lewis P.A., Stanton M. Wilsher J. (2007) Cystic fibrosis mortality and survival in the UK: 1947-2003. European Respiratory Journal 29, 522 526.
12. Ford C., English A. Sigman G. (2004) Confidential health care for adolescents: position paper of the society for adolescent medicine. Journal of Adolescent Health 35, 160 167.
13. Gabe J., Olumide G. Bury M. (2004) 'It takes three to tango': a framework for understanding patient partnership in paediatric clinics. Social Science & Medicine 59, 1071 1079.
14. Graetz B.W., Shute R.H. Sawyer M.G. (2000) An Australian study of adolescents with cystic fibrosis: perceived supportive and nonsupportive behaviours from families and friends and psychological adjustment. Journal of Adolescent Health 26, 64 69.
15. James N. (1992) Care = organisation + physical labour + emotional labour. Sociology of Health and Illness 14, 488 509.
16. Kerem E., Conway S., Elborn S. Heijerman H. for the Consensus Committee (2005) Standards of care for patients with cystic fibrosis: a European consensus. Journal of Cystic Fibrosis 4 (1 7 26.
17. Konstan M.W. Berger M. (1997) Current understanding of the inflammatory process in cystic fibrosis: onset and etiology. Pediatric Pulmonology 24, 137 142.
18. Llewellyn G., Gething L., Kendig H. Cant R. (2004) Older parent caregivers' engagement with the service system. American Journal on Mental Retardation 109, 5.
19. Lowton K. (2002) Parents and partners: lay carers' perceptions of their role in the treatment and care of adults with cystic fibrosis. Journal of Advanced Nursing 39, 174 181.
20. Lowton K. (2005) Relatives' Experiences of Care Given to Young People Who Have Died from Cystic Fibrosis. Final Report to the Cicely Saunders Foundation, King's College London, London.
21. Lowton K. Gabe J. (2003) Life on a slippery slope: perceptions of health in adults with cystic fibrosis. Sociology of Health & illness 25 (4 289 319.
22. McGuffie K., Sellers D., Sawicki G. Robinson R. (2008) Self-reported involvement of family members in the care of adults with CF. Journal of Cystic Fibrosis 7, 95 101.
23. Mohan K., Miller H., Burhan H., Ledson M.J. Walshaw M.J. (2008) Management of cystic fibrosis related diabetes: a survey of UK cystic fibrosis centers. Pediatric Pulmonology 43, 642 647.
24. Piercy K.W. (1998) Theorizing about family caregiving: the role of responsibility. Journal of Marriage and the Family 60, 109 118.
25. Rosen D.S., Blum R.W., Britto M.B., Sawyer S.M. Siegel D.M. (2003) Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society of Adolescent Medicine. Journal of Adolescent Health 33, 309 311.
26. Sokol R.J. Durie P.R. Cystic Fibrosis Foundation Hepatobiliary Disease Consensus Group (1999) Recommendations for management of liver and biliary tract disease in cystic fibrosis. Journal of Pediatric Gastroenterology and Nutrition 28 (1 S1 S13
27. Tierney S. (2005) The treatment of adolescent anorexia nervosa: a qualitative study of the views of parents. Eating Disorders 13, 369 379.
28. Twigg J. Atkin K. (1994) Carers Perceived, Policy and Practice in Informal Care. Open University Press, Buckingham, UK.
29. Weinger K., O'Donnell K.A. Ritholz M.D. (2001) Adolescent views of diabetes-related parent conflict and support: a focus group analysis. Journal of Adolescent Health 29 (5 330 336.
30. Williams C. (2000) Alert assistants in managing chronic illness: the care of mothers and teenage sons. Sociology of Health & Illness 22 (2 254 272.
31. Williams C. (2005) Mothers, Young People and Chronic Illness. Ashgate, Hampshire, UK.
32. Williams B., Somnath M., Dowell J. Coyle J. (2007) From child to adult: an exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis. Social Science and Medicine 65, 2135 2146.
33. Young B., Dixon Woods M., Windridge K.C. Heney D. (2003) Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and their parents. British Medical Journal 326, 305 310.