Self-care and cystic fibrosis: a review of research with adults.

The issue of self-care is becoming increasingly central to both policy and practice in health and social care in the community. It is imperative therefore that research in this important area is drawn together and presented coherently so as to ensure that change can be informed by evidence and implemented sensitively. As cystic fibrosis (CF) has until recently been regarded as a paediatric condition, there is relatively little research that focuses on the self-care of adults. Although not entirely uncritical of traditional biomedicine, these studies focus on individual patient deficits and are directed primarily at facilitating their 'compliance'. After discussing some important methodological, evidential and theoretical limitations of this research, other recent CF literature will be considered that suggests the possibility of developing a 'social model' for self-care research. The proposed model is more pluralistic and less prescriptive than its predecessors and the resulting 'types' of self-care indicate that both old and new, mainstream and marginal discourses should co-exist. Indeed, recognising the legitimacy of distinct varieties of self-care not only guards against unwarranted moralising and pathologising but may also enable self-care support to be negotiated and tailored more appropriately.

[1]  S. Horn,et al.  Adherence to Chest Physiotherapy in Adults with Cystic Fibrosis , 2006, Journal of health psychology.

[2]  T. Tugenberg,et al.  Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS , 2006, AIDS care.

[3]  K. Lowton,et al.  Life on a slippery slope: perceptions of health in adults with cystic fibrosis. , 2003, Sociology of health & illness.

[4]  Compliance among Adults with Cystic Fibrosis , 1990, DICP : the annals of pharmacotherapy.

[5]  Melanie L. McGrath,et al.  Typologies of Nonadherence in Cystic Fibrosis , 1990, Journal of developmental and behavioral pediatrics : JDBP.

[6]  Denise Charman,et al.  Identity and Adherence in a Diabetes Patient: Transformations in Psychotherapy , 2005, Qualitative health research.

[7]  J. D'Auria,et al.  The child's eye: memories of growing up with cystic fibrosis. , 1997, Journal of pediatric nursing.

[8]  K. Lowton 'Double or quits': perceptions and management of organ transplantation by adults with cystic fibrosis. , 2003, Social science & medicine.

[9]  K. Lowton,et al.  Cystic fibrosis adults' perception and management of the risk of infection with Burkholderia cepacia complex , 2006 .

[10]  L. K. Baker,et al.  Predictors of self-care in adolescents with cystic fibrosis: a test of Orem's theories of self-care and self-care deficit. , 2008, Journal of pediatric nursing.

[11]  L. Myers,et al.  The relationship between control beliefs and self-reported adherence in adults with cystic fibrosis , 1999 .

[12]  D. Bilton,et al.  Patients' Knowledge of Cystic Fibrosis: Genetic Determinism and Implications for Treatment , 2004, Journal of Genetic Counseling.

[13]  T. Rustøen,et al.  Growing Up and Living With Cystic Fibrosis: Everyday Life and Encounters With the Health Care and Social Services—A Qualitative Study , 2003, ANS. Advances in nursing science.

[14]  L. Myers An exploratory study investigating factors associated with adherence to chest physiotherapy and exercise in adults with cystic fibrosis. , 2009, Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society.

[15]  C. Rand,et al.  Nonadherence in asthmatic patients: is there a solution to the problem? , 1997, Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology.

[16]  D. Broom,et al.  Controlling diabetes, controlling diabetics: moral language in the management of diabetes type 2. , 2004, Social science & medicine.

[17]  L. K. Bartholomew,et al.  Self-management of cystic fibrosis: a structural model for educational and behavioral variables. , 1994, Social science & medicine.

[18]  K. Lutfey On practices of 'good doctoring': reconsidering the relationship between provider roles and patient adherence. , 2005, Sociology of health & illness.

[19]  Stephanie Tierney,et al.  Isolation, motivation and balance: living with type 1 or cystic fibrosis-related diabetes. , 2008, Journal of clinical nursing.

[20]  J. Abbott,et al.  Treatment compliance in adults with cystic fibrosis. , 1994, Thorax.

[21]  Iris Gault Service-user and carer perspectives on compliance and compulsory treatment in community mental health services. , 2009, Health & social care in the community.

[22]  K. Badlan Young people living with cystic fibrosis: an insight into their subjective experience. , 2006, Health & social care in the community.

[23]  J. Abbott,et al.  Health perceptions and treatment adherence in adults with cystic fibrosis. , 1996, Thorax.

[24]  M. Dodd,et al.  Understanding non-compliance with treatment in adults with cystic fibrosis. , 2000, Journal of the Royal Society of Medicine.

[25]  Arthur W. Frank,et al.  The Wounded Storyteller: Body, Illness, and Ethics , 1995 .

[26]  U. Wahn,et al.  Body Image in Cystic Fibrosis – Development of a Brief Diagnostic Scale , 2003, Journal of Behavioral Medicine.

[27]  I. Greener Expert Patients and Human Agency: Long-term Conditions and Giddens' Structuration Theory , 2008 .

[28]  Katie J. Ward,et al.  What are health identities and how may we study them? , 2008, Sociology of health & illness.

[29]  B. Paterson,et al.  Critical analysis of everyday self-care decision making in chronic illness. , 2001, Journal of advanced nursing.

[30]  J. Abbott,et al.  Contemporary psychosocial issues in cystic fibrosis: treatment adherence and quality of life. , 1998, Disability and rehabilitation.

[31]  J. Abbott,et al.  Ways of coping with cystic fibrosis: implications for treatment adherence. , 2001, Disability and rehabilitation.

[32]  S. Walters Sex differences in weight perception and nutritional behaviour in adults with cystic fibrosis. , 2001, Journal of human nutrition and dietetics : the official journal of the British Dietetic Association.

[33]  K. Lowton Parents and partners: lay carers' perceptions of their role in the treatment and care of adults with cystic fibrosis. , 2002, Journal of advanced nursing.

[34]  J. Malacara,et al.  Adherence to treatment and social support in patients with non-insulin dependent diabetes mellitus. , 1995, Journal of diabetes and its complications.

[35]  M. Boyle So many drugs, so little time: the future challenge of cystic fibrosis care. , 2003, Chest.

[36]  H. Winefield,et al.  Determinants of adherence in adults with cystic fibrosis , 2002, Thorax.

[37]  J. Wyn,et al.  Gendered embodiment and survival for young people with cystic fibrosis. , 2001, Social science & medicine.

[38]  K. Lowton Only when I Cough? Adults’ Disclosure of Cystic Fibrosis , 2004, Qualitative health research.

[39]  S P Conway,et al.  Compliance with treatment in adult patients with cystic fibrosis. , 1996, Thorax.

[40]  K. Ballard,et al.  Adult cystic fibrosis patients' experiences of primary care consultations: a qualitative study. , 2006, The British journal of general practice : the journal of the Royal College of General Practitioners.

[41]  M. Bury,et al.  Towards a Theory of Care Transition: From Medical Dominance to Managed Consumerism , 2008 .

[42]  C. Eiser,et al.  Treatment demands and differential treatment of patients with cystic fibrosis and their siblings: patient, parent and sibling accounts. , 2001, Child: care, health and development.

[43]  T. Greenhalgh,et al.  Prevention of type 2 diabetes in British Bangladeshis: qualitative study of community, religious, and professional perspectives , 2008, BMJ : British Medical Journal.

[44]  G. Sawicki,et al.  High treatment burden in adults with cystic fibrosis: challenges to disease self-management. , 2009, Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society.