1,082
Views
1
CrossRef citations to date
0
Altmetric
Articles

Negotiating boundaries of care: an interpretative phenomenological analysis of the relational conflicts surrounding home mechanical ventilation following traumatic spinal cord injury

, , , , , & ORCID Icon show all
Pages 120-135 | Received 18 Dec 2017, Accepted 17 Mar 2018, Published online: 25 Apr 2018

References

  • Ballangrud, R., Bogsti, W. B., & Johansson, I. S. (2009). Clients’ experiences of living at home with a mechanical ventilator. Journal of Advanced Nursing, 65(2), 425–434. doi: 10.1111/j.1365-2648.2008.04907.x
  • Beale, H. (2002). Respite care for technology-dependent children and their families. Paediatric Nursing, 14, 18–19. doi: 10.7748/paed.14.7.18.s17
  • Brannen, C., & Petite, K. (2008). An alternative framework for understanding women's caregiving stress: A qualitative application of the ways of coping model. Journal of Health Psychology, 13(3), 355–365. doi: 10.1177/1359105307088140
  • Carroll, S. M. (2007). Silent, slow lifeworld: The communication experience of nonvocal ventilated patients. Qualitative Health Research, 17(9), 1165–1177. doi: 10.1177/1049732307307334
  • Charlifue, S., Apple, D., Burns, S. P., Chen, D., Cuthbert, J. P., Donovan, W. H., … Pretz, C. R. (2011). Mechanical ventilation, health, and quality of life following spinal cord injury. Archives of Physical Medicine and Rehabilitation, 92(3), 457–463. doi: 10.1016/j.apmr.2010.07.237
  • Choi, J., Donahoe, M. P., Zullo, T. G., & Hoffman, L. A. (2011). Caregivers of the chronically critically ill after discharge from the intensive care unit: Six months’ experience. American Journal of Critical Care, 20(1), 12–23; quiz 23. doi: 10.4037/ajcc2011243
  • Coffman, S. (1995). Crossing lines: Parents’ experiences with pediatric nurses in the home. Rehabilitation Nursing Research, 4, 136–136.
  • Dickson, A., O’Brien, G., Ward, R., Flowers, P., Allan, D., & O’Carroll, R. (2012). Adjustment and coping in spousal caregivers following a traumatic spinal cord injury: An interpretative phenomenological analysis. Journal of Health Psychology, 17(2), 247–257. doi: 10.1177/1359105311411115
  • Dreyer, P. S., Steffensen, B. F., & Pedersen, B. D. (2010). Life with home mechanical ventilation for young men with duchenne muscular dystrophy. Journal of Advanced Nursing, 66(4), 753–762. doi: 10.1111/j.1365-2648.2009.05233.x
  • Dybwik, K., Nielsen, E. W., & Brinchmann, B. S. (2011). Home mechanical ventilation and specialised health care in the community: Between a rock and a hard place. BMC Health Services Research, 11, 115. doi: 10.1186/1472-6963-11-115
  • Findeis, A., Larson, J. L., Gallo, A., & Shekleton, M. (1994). Caring for individuals using home ventilators: An appraisal by family caregivers. Rehabilitation Nursing, 19(1), 6–11. doi: 10.1002/j.2048-7940.1994.tb01295.x
  • Glass, C., Grap, M. J., & Battle, G. (1999). Preparing the patient and family for home mechanical ventilation. Medsurg Nursing, 8(2), 99–101, 104–107.
  • Gleckman, A. D., Phillippi, T., & Rohr, R. (1996). 14. Psychological adjustment to mechanical ventilation in a long-term care setting. Biological Psychology, 43(3), 250. doi: 10.1016/0301-0511(96)88239-1
  • Goldstein, L. H., Adamson, M., Jeffrey, L., Down, K., Barby, T., Wilson, C., & Leigh, P. N. (1998). The psychological impact of MND on patients and carers. Journal of the Neurological Sciences, 160(Supplement 1), S114–S121. doi: 10.1016/S0022-510X(98)00209-3
  • Khalaila, R., Zbidat, W., Anwar, K., Bayya, A., Linton, D. M., & Sviri, S. (2011). Communication difficulties and psychoemotional distress in patients receiving mechanical ventilation. American Journal of Critical Care, 20(6), 470–479. doi: 10.4037/ajcc2011989
  • Kirk, S., & Glendinning, C. (1999). Supporting Parents Caring for a Technology-Dependent Child. Retrieved from Manchester:
  • Kirk, S., & Glendinning, C. (2002). Supporting ‘expert’ parents: Professional support and families caring for a child with complex health care needs in the community. International Journal of Nursing Studies, 39, 625–635. doi: 10.1016/S0020-7489(01)00069-4
  • Lewarski, J. S., & Gay, P. C. (2007). Current issues in home mechanical ventilation. Chest, 132(2), 671–676. doi: 10.1378/chest.07-0558
  • Lindahl, B., & Lindblad, B. M. (2011). Family members’ experiences of everyday life when a child is dependent on a ventilator: A metasynthesis study. Journal of Family Nursing, 17(2), 241–269. doi: 10.1177/1074840711405392
  • Lindahl, B., Sandman, P.-O., & Rasmussen, B. H. (2003). Meanings of living at home on a ventilator. Nursing Inquiry, 10(1), 19–27. doi: 10.1046/j.1440-1800.2003.00160.x
  • Lindahl, B., Sandman, P. O., & Rasmussen, B. H. (2005). On becoming dependent on home mechanical ventilation. Journal of Advanced Nursing, 49(1), 33–42. doi: 10.1111/j.1365-2648.2004.03261.x
  • Lloyd-Owen, S. J., Donaldson, G. C., Ambrosino, N., Escarabill, J., Farre, R., Fauroux, B., … Wedzicha, J. A. (2005). Patterns of home mechanical ventilation use in Europe: Results from the eurovent survey. European Respiratory Journal, 25(6), 1025–1031. doi: 10.1183/09031936.05.00066704
  • Morse, J. M., Wilson, S., & Penrod, J. (2000). Mothers and their disabled children: Refining the concept of normalization. Health Care for Women International, 21(8), 659–676. doi: 10.1080/073993300300340501
  • Noyes, J. (2006). Health and quality of life of ventilator-dependent children. Journal of Advanced Nursing, 56(4), 392–403. doi: 10.1111/j.1365-2648.2006.04014.x
  • Oresland, S., Maatta, S., Norberg, A., Jorgensen, M. W., & Lutzen, K. (2008). Nurses as guests or professionals in home health care. Nursing Ethics, 15(3), 371–383. doi: 10.1177/0969733007088361
  • Patterson, J. M., Jernell, J., Leonard, B. J., & Titus, J. C. (1994). Caring for medically fragile children at home: The parent-professional relationship. Journal of Pediatric Nursing, 9(2), 98–106.
  • Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis theory, method and research. London: Sage.
  • Tang, C. S.-K. (2009). The influence of family—work role experience and mastery on psychological health of Chinese employed mothers. Journal of Health Psychology, 14(8), 1207–1217. doi: 10.1177/1359105309342302
  • Van Pelt, D. C., Milbrandt, E. B., Qin, L., Weissfeld, L. A., Rotondi, A. J., Schulz, R., … Pinsky, M. R. (2007). Informal caregiver burden among survivors of prolonged mechanical ventilation. American Journal of Respiratory and Critical Care Medicine, 175(2), 167–173. doi: 10.1164/rccm.200604-493OC
  • Wang, K. W., & Barnard, A. (2008). Caregivers’ experiences at home with a ventilator-dependent child. Qualitative Health Research, 18(4), 501–508. doi: 10.1177/1049732307306185
  • Weitzenkamp, D. A., Gerhart, K. A., Charlifue, S. W., Whiteneck, G. G., & Savic, G. (1997). Spouses of spinal cord injury survivors: The added impact of caregiving. Archives of Physical Medicine and Rehabilitation, 78(8), 822–827. doi: 10.1016/S0003-9993(97)90194-5