Living a ‘normal life’? Formal and informal supports in the lives of adults with cystic fibrosis

References

• Abbott , J. 2009 . Health-related quality of life measurement in cystic fibrosis: advances and limitations . Chronic Respiratory Disease , 6 ( 1 ) : 31 – 41 .
   PubMedGoogle Scholar
• Barnes , C. 1998 . “ The social model of disability: A sociological phenomenon ignored by sociologists? ” . In The Disability Reader: Social Sciences Perspectives , Edited by: Shakespeare , T. 65 – 78 . London : Cassell .
   Google Scholar
• Barnes , C. 2003 . Rehabilitation for disabled people: A ‘sick’ joke? . Scandinavian Journal of Disability Research , 5 : 17 – 23 .
   Google Scholar
• Barnes , C. 2004 . Independent living, politics and implications . University of Leeds Disability Archive. http://www.leeds.ac.uk/disability-studies/archiveuk/Barnes/Jane%27s%20paper.pdf .
   Google Scholar
• Barnes , C. , and G. Mercer 2010 . Exploring Disability, , 2nd ed . Cambridge : Polity .
   Google Scholar
• Brisenden , S. 1986 . Independent living and the medical model of disability . Disability, Handicap & Society , 1 ( 2 ) : 173 – 178 .
   Google Scholar
• Cabinet Office . 2011 . Big Society – overview . http://www.cabinetoffice.gov.uk/content/big-society-overview .
   Google Scholar
• Carr , S. 2010 . Personalisation: A rough guide , London : Social Care Institute for Excellence .
   Google Scholar
• CFT . 2004 . Pseudomonas aeruginosa infection in people with CF: Suggestions for prevention and infection control , 2nd ed. Cystic Fibrosis Trust Infection Control Group . London : Cystic Fibrosis Trust .
   Google Scholar
• Charmaz , K. 2008 . “ Grounded theory as an emergent method ” . In Handbook of Emergent Methods , Edited by: Hesse-Biber , S.N. and Leavy , P. 155 – 70 . New York : Guilford Press .
   Google Scholar
• Conway , S.P , K.G . Brownlee , D.G. Peckham , and T.W.R. Lee with C. Etherington . 2008 . Cystic Fibrosis in children and adults: The Leeds method of management , rev. ed. 7. St. James's & Seacroft University Hospital, Leeds Teaching Hospitals Trust, UK .
   Google Scholar
• Crow , L. 1996 . “ Including All of our lives: Renewing the social model of disability ” . In Encounters with strangers: Feminism and disability , Edited by: Morris , J. London : The Women's Press .
   Google Scholar
• Dauk . 2011 . R68: End of a lifeline? Ending Disability Living Allowance to introduce Personal Independence Payment . London : Disability Alliance UK . Available from http://www.disabilityalliance.org/r68.htm .
   Google Scholar
• Department of Health . 2010a . A vision for adult social care: Capable communities and active citizens . London : Department of Health .
   Google Scholar
• Department of Health . 2010b . Delivering social care . London : Department of Health . http://www.dh.gov.uk/en/SocialCare/Deliveringsocialcare/index.htm .
   Google Scholar
• Department of Health . 2010c . Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care – Guidance on Eligibility Criteria for Adult Social Care, England 2010 . London : Department of Health . http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113155.pdf .
   Google Scholar
• Disability Rights Commission . 2004 . The web: access and inclusion for disabled people: a formal investigation conducted by the Disability Rights Commission . London : TSO .
   Google Scholar
• Department for Work and Pensions . 2010 . Public consultation: Disability Living Allowance Reform . London : Department for Work and Pensions . http://dwp.gov.uk/docs/dla-reform-consultation.pdf .
   Google Scholar
• Edwards , J. 2007 . The life experiences of adults with cystic fibrosis and the social and medical models of disability . Unpublished Thesis. University of Sheffield: Department of Sociological studies .
   Google Scholar
• Edwards , J. and Boxall , K. 2010 . Adults with cystic fibrosis and barriers to employment . Disability & Society , 25 ( 4 ) : 441 – 453 .
   Web of Science ®Google Scholar
• Fuller , M. , Bradley , A. and Healey , M. 2004 . Incorporating disabled students within an inclusive higher education environment . Disability and Society , 19 ( 5 ) : 455 – 468 .
   Web of Science ®Google Scholar
• Greenop , D. , Glenn , S. , Lodson , M. and Walshaw , M. 2010 . Self-care and cystic fibrosis: a review of research with adults . Health and Social Care in the Community , 18 ( 6 ) : 653 – 661 .
   PubMed Web of Science ®Google Scholar
• Harrison , M. 2009 . New contexts, new challenges: revisiting equal opportunities, particularism, and ethnic relations . People, Place & Policy Online , 3 ( 3 ) : 132 – 146 .
   Google Scholar
• Imrie , R. 2004 . Demystifying disability: a review of the International Classification of Functioning, Disability and Health . Sociology of Health & Illness , 26 : 287 – 305 .
   PubMed Web of Science ®Google Scholar
• Jacklin , T. , and S. Hillyard 1999 . Report from IACFA and ICF(M)A. A sponsored meeting with the World Health Organisation (WHO) on optimal care for adults with cystic fibrosis . IACFA Newsletter , Issue 57 December: 6–13 .
   Google Scholar
• Kerr , A. 2005 . Understanding genetic disease in a socio-historical context: a case study of cystic fibrosis . Sociology of Health and Illness , 27 ( 7 ) : 873 – 896 .
   PubMed Web of Science ®Google Scholar
• Law Commission 2011 . Adult Social Care: Presented to Parliament pursuant to section 3(2) of the Law Commissions Act 1965 . London : The Stationery Office .
   Google Scholar
• Leece , J. and Peace , S. 2010 . Developing new understandings of independence and autonomy in the personalised relationship . British Journal of Social Work , 40 : 1847 – 1865 .
   Web of Science ®Google Scholar
• Lowton , K. 2002 . Parents and partners: the role of lay carers in the treatment and care of adults with cystic fibrosis . Journal of Advanced Nursing , 39 ( 2 ) : 1 – 8 .
   PubMed Web of Science ®Google Scholar
• McGuffie , K. , Sellers , D.E. , Sawickib , G.S. and Robinson , M. 2008 . Self-reported involvement of family members in the care of adults with CF . Journal of Cystic Fibrosis , 7 ( 2 ) : 95 – 101 .
   PubMed Web of Science ®Google Scholar
• Oliver , M. 2009 . Understanding disability: from theory to practice , 2nd edn , Basingstoke : Palgrave Macmillan .
   Google Scholar
• Oliver , M. and Barnes , C. 1998 . Social policy and disabled people: From exclusion to inclusion , London : Longman .
   Google Scholar
• Office for National Statistics . 2010 . Internet access: 60% of adults access Internet every day in 2010 . London : Office for National Statistics . http://www.statistics.gov.uk/cci/nugget.asp?id = 8 .
   Google Scholar
• Pfeffer , P.E. , Pfeffer , J.M. and Hobson , M.W. 2003 . The psychosocial and psychiatric side of cystic fibrosis in adolescents and adults . Journal of Cystic Fibrosis , 2 ( 2 ) : 61 – 68 .
   PubMedGoogle Scholar
• Simmonds , M.J. , Cullinan , P. and Hodson , M.E. 2008 . Growing old with cystic fibrosis: the characteristics of long term survival . Journal of Cystic Fibrosis , 2 ( 2 ) : 631 – 648 .
   Google Scholar
• Stone , D. 1984 . The disabled state , Basingstoke : Macmillan .
   Google Scholar
• Strauss , A. and Corbin , J. 1998 . The basics of qualitative research: Techniques and procedures for developing grounded theory , London : Sage .
   Google Scholar
• Sturges , J.E. and Hanrahan , K.J. 2004 . Comparing telephone and face-to face qualitative interviewing: a research note . Qualitative Research , 4 ( 1 ) : 107 – 118 .
   Google Scholar
• Swain , J. , French , S. and Cameron , C. 2003 . Controversial issues in a disabling society , Buckingham : The Open University Press .
   Google Scholar
• Thomas , C. 2007 . Sociologies of disability and illness , Basingstoke : Palgrave Macmillan .
   Google Scholar
• Tøssebro , J. 2004 . Introduction to the special issue: Understanding disability’ . Scandinavian Journal of Disability Research , 6 ( 1 ) : 3 – 7 .
   Google Scholar
• Willig , C. 2008 . Introducing qualitative research in psychology , Maidenhead : Open University Press .
   Google Scholar