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Exerting control and adapting to loss in amyotrophic lateral sclerosis

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  • Foley, Geraldine
  • Timonen, Virpi
  • Hardiman, Orla

Abstract

People with amyotrophic lateral sclerosis (ALS) engage with a broad range of health care services from symptom onset to end-of-life care. We undertook a grounded theory study to identify processes that underpin how and why people with ALS engage with health care services. Using theoretical sampling procedures, we sampled 34 people from the Irish ALS population-based register during September 2011 to August 2012. We conducted in-depth interviews with participants about their experiences of health care services. Our study yielded new insights into how people with ALS engage with services and adapt to loss. People with ALS live with insurmountable loss and never regain what they have already lost. Loss for people with ALS is multidimensional and includes loss of control. The experience of loss of control prompts people with ALS to search for control over health care services but exerting control in health care services can also include rendering control to service providers. People with ALS negotiate loss by exerting control over and rendering control to health care services. Our findings are important for future research that is attuned to how people with terminal illness exert control in health care services and make decisions about care in the context of mounting loss.

Suggested Citation

  • Foley, Geraldine & Timonen, Virpi & Hardiman, Orla, 2014. "Exerting control and adapting to loss in amyotrophic lateral sclerosis," Social Science & Medicine, Elsevier, vol. 101(C), pages 113-119.
  • Handle: RePEc:eee:socmed:v:101:y:2014:i:c:p:113-119
    DOI: 10.1016/j.socscimed.2013.11.003
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    References listed on IDEAS

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    1. Plahuta, Janice M. & McCulloch, B. Jan & Kasarskis, Edward J. & Ross, Mark A. & Walter, Rhoda A. & McDonald, Evelyn R., 2002. "Amyotrophic lateral sclerosis and hopelessness: psychosocial factors," Social Science & Medicine, Elsevier, vol. 55(12), pages 2131-2140, December.
    2. Rodriguez, Keri L. & Young, Amanda J., 2006. "Patients' and healthcare providers' understandings of life-sustaining treatment: Are perceptions of goals shared or divergent?," Social Science & Medicine, Elsevier, vol. 62(1), pages 125-133, January.
    3. Ranchor, Adelita V. & Wardle, Jane & Steptoe, Andrew & Henselmans, Inge & Ormel, Johan & Sanderman, Robbert, 2010. "The adaptive role of perceived control before and after cancer diagnosis: A prospective study," Social Science & Medicine, Elsevier, vol. 70(11), pages 1825-1831, June.
    4. Kutner, Jean S & Steiner, John F & Corbett, Kitty K & Jahnigen, Dennis W & Barton, Phoebe L, 1999. "Information needs in terminal illness," Social Science & Medicine, Elsevier, vol. 48(10), pages 1341-1352, May.
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    Cited by:

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    2. Chase, Rachel P. & McMahon, Shannon A. & Winch, Peter J., 2015. "Injury careers after blast exposure among combat veterans deployed to Iraq or Afghanistan," Social Science & Medicine, Elsevier, vol. 147(C), pages 309-316.

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