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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.
Young people living with cystic fibrosis: an insight into their subjective experience
- Author:
- BADLAN Kathryn
- Journal article citation:
- Health and Social Care in the Community, 14(3), May 2006, pp.264-270.
- Publisher:
- Wiley
The aim of this article is to explore the experiences of young people living with cystic fibrosis and the impact of these experiences on their compliance to treatment regimen. Thirty-one young adults participated in semi-structured interviews which were transcribed and the data collected analysed using interpretative phenomenology. Emerging themes underlined just how complex it is to manage life with a chronic illness as demanding as cystic fibrosis. A strong emphasis emerged from the participants about their desire to integrate into society and to be seen to be normal and this was seen as in conflict with some aspects of their recommended ongoing treatment. The findings suggested that complete compliance is rare and is affected by a multitude of factors, set within the context of each individual's unique life experience. Healthcare professionals need to understand, not just the objective medical condition in delivering care, but they also need to develop an insight into the subjective experience of living with illnesses such as cystic fibrosis. Their central concern should not be to maximise compliance but rather to support the making of informed decisions about broader lifestyles and health behaviours.
What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?
- Authors:
- ILES Nicola, LOWTON Karen
- Journal article citation:
- Health and Social Care in the Community, 18(1), January 2010, pp.21-29.
- Publisher:
- Wiley
The majority of those diagnosed with cystic fibrosis now live to adulthood. Transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. The aim of this study was to examine how young people and staff perceive the nature of parental care and support for those with cystic fibrosis who have left paediatric services. As part of a larger study of transitional care, semi-structured interviews were conducted with 50 young people aged 13-24 years with cystic fibrosis and 23 specialist healthcare professionals across 2 cystic fibrosis centres in southeast England. Four domains of perceived parental support were identified by the young people interviewed: providing non-clinical practical and emotional support; acting as ‘troubleshooters’ in times of health-related crisis; working in partnership with offspring in ongoing disease management in the home and clinic; and acting as ‘protectors’ of their children. Young people and service staff expressed tensions in managing parental involvement in post-paediatric consultations and the degree to which parents should be aware of their offspring’s deteriorating health and social concerns. Parental anxiety and over-involvement was perceived by many young people and staff as unsupportive. The article concludes by suggesting that there is a need to search for appropriate practical ways of continuing to include parents in young people’s care in adult services, while ensuring that the privacy and confidentiality of the patient are maintained.
Cystic Fibrosis and the transition to adulthood
- Authors:
- PALMER Mary Kay Lannon, BOISEN Laura S.
- Journal article citation:
- Social Work in Health Care, 36(1), 2002, pp.45-57.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Cystic fibrosis (CF) has long been thought of as a childhood disease but the life expectancy for those with CF has been steadily on the rise and now reaches well into adulthood. There has been little or no research on the psychosocial impact of CF on becoming an adult. This exploratory, qualitative study examined the perceptions ofyoung adults with CF regarding the impact the disease has had on their lives, especially during the transition from adolescence to adulthood.