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Dependence on Care Experienced by People Living With Duchenne Muscular Dystrophy and Spinal Cord Injury

Martinsen, Bente; Dreyer, Pia

Journal of Neuroscience Nursing: April 2012 - Volume 44 - Issue 2 - p 82–90
doi: 10.1097/JNN.0b013e3182477a62
Article

ABSTRACT: Being dependent on care in a hospital or in a traditional homecare setting may generate an experience of inferiority in patients. In a private home, dependence is easier to bear if the dependent person has the possibility to influence the planning of care. Little is known about the experience of being dependent on care in a private home, where the dependent person employs his or her own helpers. The aim of this study was to describe the meaning of dependence on care in a private home setting among people living with help requirements for all aspects of daily life. The article draws on two interview studies of people with high cervical spinal cord injury and men with Duschenne muscular dystrophy. Transcriptions of the interviews were analyzed according to a phenomenological hermeneutic approach influenced by Paul Ricoeur’s philosophy of interpretation. The meaning of all the interview texts is presented as four short stories. Four themes were identified: the helper as liberating, the paramount verbalization of own needs, the creative engagement in life, and accessibility as an issue in everyday life. Dependence on care was identified to be a movement between freedom and restriction, where the helpers played a crucial role, because it was key that they were sensitive to the signals they got and were able to transform words into meticulous actions.

Questions or comments about this article may be directed to Bente Martinsen, RN MScN PhD, at bm@nursingscience.au.dk. She is an assistant professor at the Institute of Public Health, Department of Nursing Science, Aarhus University, Aarhus, Denmark.

Pia Dreyer, RN MScN PhD, is a clinical nurse specialist at Aarhus University Hospital, Department of Anaesthesiology and Intensive Care, Aarhus, Denmark, and an assistant professor at Institute of Public Health, Department of Nursing Science, Aarhus University, Aarhus, Denmark.

There are no conflicts of interest, and this study did not receive any financial support.

© 2012 American Association of Neuroscience Nurses