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Journal article

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

Authors:
GREENOP Daz, et al
Journal article citation:
Health and Social Care in the Community, 18(6), November 2010, pp.653-661.
Publisher:
Wiley-Blackwell

Self-care is central to both policy and practice in health and social care in the community. It is important that research in this 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 is considered that suggests the possibility of developing a social model for self-care research. The proposed model is more diverse than its predecessors and the resulting types of self-care indicate that old and new, mainstream and marginal discourses should co-exist. The authors conclude that recognising the legitimacy of distinct varieties of self-care not only guards against unwarranted moralising but may also enable self-care support to be tailored appropriately.

Book

Cystic fibrosis: a guide for parents and sufferers

Author:
BRAY Percy
Publisher:
Souvenir Press
Publication year:
1989
Pagination:
181p., illus., diags., bibliog.
Place of publication:
London

Sets out a strategy for parents and patients, enabling them to understand the condition and learn to manage it in the course of their everyday lives.

Journal article

The expansion of abnormality and the biomedical norm: neonatal screening, prenatal diagnosis and cystic fibrosis in France

Author:
VAILLY Joelle
Journal article citation:
Social Science and Medicine, 66(12), June 2008, pp.2532-2543.
Publisher:
Elsevier

Developments in biomedicine have remodelled the time-honoured questions of how to define the normal and the connection between the normal and the norm. This article deals with the expansion of the idea of abnormality through a study of the practices involved in neonatal screening for cystic fibrosis in France. It is based on observations made at meetings between paediatricians and geneticists involved in the screening programme, and a seven-month study in a tertiary care centre for cystic fibrosis. On one hand, the study highlights the technical limitations of screening, which have the effect of expanding biological abnormality. On the other, it deals with the rationales and associated practices used by health care professionals for paediatric monitoring that are behind the expansion of clinical abnormality. Lastly, the consequences of those practices are analysed at the point where neonatal screening and prenatal diagnosis meet, showing how the biomedical norm, with respect to foetuses, is altered. The political and moral space in which this development has occurred is discussed.

Journal article

Evaluation of transition services for young people with cystic fibrosis in Southeast London

Authors:
LOWTON Karen, et al
Journal article citation:
Journal of Interprofessional Care, 19(4), August 2005, pp.408-409.
Publisher:
Informa Healthcare

The authors report a project being launched to evaluate transition services for young people with Cystic Fibrosis (CF) living in Southeast London, UK, and attending either King's College Hospital (KCH) or University Hospital Lewisham (UHL).

Journal article

Meeting the needs of families with a member with cystic fibrosis: a critical review of the literature

Author:
OSBORNE Stephen
Journal article citation:
Social Services Research, 4 1994, 1994, pp.41-53.
Publisher:
Social Services Research Group

The article examines the breadth of existing knowledge about the social needs of families with a life threatening illness. The 1980's have been chosen as a focus as a way of partly limiting the size of the study and partly because of the pace of medical development and change over the last two decades. Outlines the methodology and provides an extensive bibliography at the end of the article.

Book

Cystic fibrosis project: a survey of the needs of families in the Midlands area

Author:
NEALE Tina
Publisher:
Barnardo's
Publication year:
1987
Pagination:
53p.
Place of publication:
Halesowen
Journal article

What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis? A systematic review

Author:
GAGE L. Ashley
Journal article citation:
Health and Social Work, 37(1), February 2012, pp.29-36.
Publisher:
Oxford University Press

The expected life span of patients with cystic fibrosis (CF) continues to rise due to advances in treatments. The rate of pregnancy for female patients with CF has also continued to rise. This review examined the literature on female patients with CF and their knowledge of sexual and reproductive health. The review explored which deficits in sexual and reproductive health knowledge existed among women with cystic fibrosis. Three broad areas of knowledge lacking in female patients with CF were identified: physiological, genetic, and psychosocial. The results suggested that female patients with CF were not equipped with adequate information for the decision-making process involved in sexual and reproductive choices. Because of social work's important role in the holistic care approach to CF and other chronic and debilitating illnesses, the authors concluded that social work literature should focus greater attention on these topics.

Journal article

Siblings of children with cystic fibrosis: quality of life and the impact of illness

Authors:
HAVERMANS T., et al
Journal article citation:
Child: Care, Health and Development, 37(2), March 2011, pp.252-260.
Publisher:
Wiley-Blackwell

The objective of this research, undertaken in Belgium, was to investigate the impact of cystic fibrosis on siblings of a child with the illness and their self-reported quality of life. In the study, 39 siblings aged 10-18 years recruited from 2 cystic fibrosis centres in Leuven and Brussels completed the Child Health Questionnaire and the Sibling Perception Questionnaire. Analysis of the results showed that siblings of children with cystic fibrosis rated their quality of life higher than siblings of healthy children on most domains, indicating that living with cystic fibrosis does not necessarily have a negative effect on siblings' quality of life. However, the study also found that older siblings reported lower self-esteem, indicating a higher impact of the illness. The researchers note that perception of the impact of cystic fibrosis on siblings and their quality of life is related to some indices of illness severity. They suggest that insight into sibling issues helps cystic fibrosis teams to provide family oriented care.

Journal article

Adults with cystic fibrosis and barriers to employment

Authors:
EDWARDS Jill, BOXALL Cathy
Journal article citation:
Disability and Society, 25(4), June 2010, pp.441-453.
Publisher:
Taylor and Francis,

Concentrating particularly on findings related to employment, this paper discusses findings from a qualitative study which explored the life experiences of adults with cystic fibrosis from a social model perspective, using questionnaires and telephone interviews with a sample of 23 adults with cystic fibrosis. The article provides background information about cystic fibrosis, outlines the methods employed to research participants' employment experiences, and discusses the findings concerning securing and maintaining employment, and underemployment and participants' own solutions. The authors conclude that many of the barriers to employment highlighted by the study participants appear to centre on employers' medicalised understandings of the employment of adults with cystic fibrosis, and discuss the study findings and their implications, arguing that unless the employment of adults with cystic fibrosis is examined from a social model perspective, the discrimination and exclusion from full participation in the labour market which they experience will continue to go unchallenged.

Journal article

A bed in the middle of nowhere’: Parents' meanings of place of death for adults with cystic fibrosis

Author:
KOWTON Karen
Journal article citation:
Social Science and Medicine, 69(7), October 2009, pp.1056-1062.
Publisher:
Elsevier

Through analysis of in-depth interviews and letters received from parents of 27 young adults in England, Scotland and Wales who died from cystic fibrosis from 1999 to 2002 aged 17–36 years, key factors that influence families' meanings of place at end of life are presented. Both home and hospital deaths are reported, with no deaths in hospices. Preferences for possible locations of death are generally limited early in the disease course by choice of aggressive treatment, particularly lung transplantation. Rate of health decline, organisation and delivery of services, and relationships with specialist and general healthcare staff strongly influence parents' experience of death at home or in hospital, although no physical location was regarded a ‘better’ place of death. Meanings of, and attachment to place are mediated for families through these factors, questioning the appropriateness of a ‘home is best’ policy for those dying from life-limiting conditions.

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