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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.
The experience of receiving a diagnosis of Cystic Fibrosis after age 20: implications for social work
- Author:
- WIDERMAN Eileen
- Journal article citation:
- Social Work in Health Care, 39(3/4), 2004, pp.415-433.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Using the phenomenological approach of Van Manen, this study explored the lived experience of receiving a diagnosis of cystic fibrosis as an adult. Ten essential themes were generated from the stories of 36 participants: Awareness of Death, Change, Difference, Distraction, Family Indifference, Intrusion, Isolation, Normalizing, Time, and Uncertainty. Themes associated with gender, illness severity, and medical care were also developed. Although themes were similar to those in the chronic illness literature, late-diagnosis of CF was found to be a unique experience. Participants sought personal relationships with caregivers and educational materials targeted to their needs. Implications for social work are discussed. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580)
Transcending through disability and death: transpersonal themes in living with cystic fibrosis
- Author:
- CANDA Edward R.
- Journal article citation:
- Social Thought: Journal of Religion in the Social Services, 20(1/2), 2001, pp.109-134.
- Publisher:
- Haworth Press
- Place of publication:
- Binghamton, New York
This study examines transpersonal themes related to a sense of dealing with spiritual transcendence through disability and death as represented in the views of adults with cystic fibrosis (CF), a life threatening chronic hereditary disease. Analysis of on-line discussion, autobiographical writings, and interviews of 16 people with CF identified spiritual beliefs, spiritual metaphors, transpersonal development patterns, and accounts of transpersonal experiences, such as miracles and contact with sacred beings. The principles of empowerment and phenomenologically oriented research for transpersonal topics shaped the methodology of this qualitative study. Implications for spiritually sensitive social work practice with people with chronic illness are presented.