+ Site Statistics
+ Search Articles
+ PDF Full Text Service
How our service works
Request PDF Full Text
+ Follow Us
Follow on Facebook
Follow on Twitter
Follow on LinkedIn
+ Subscribe to Site Feeds
Most Shared
PDF Full Text
+ Translate
+ Recently Requested

Informal caregivers' needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences

Informal caregivers' needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences

Disability and Rehabilitation 38(2): 159-167

Spinal cord injuries (SCI) are one of the most complex and disabling diseases, implying severe consequences on aspects of life of people affected by SCI and their caregivers. The aim of our study was to explore the situation of informal caregivers of persons with SCI when discharged home from a SCI Unit, in relation to needs, emotional experiences, difficulties and subsequent reactions to discharge. A purposive sample of 11 caregivers were interviewed on patients' discharge home from the Spinal Injury Care Unit and at 6 months. The semi-structured interviews were analyzed using a qualitative phenomenological methodology as described by Giorgi. Five main themes emerged from the caregivers' experiences including their implicit and explicit needs. Problems concerning communication with healthcare professionals and the need for an adequate multidisciplinary taking charge of caregivers in order to support their new role emerged within all the themes. Results suggest that greater caregiver involvement in the rehabilitation process and their preparation for discharge are required. Communication with healthcare professionals needs to be enhanced. It would be useful to organize follow-up visits after discharge to assess intervention effectiveness. Understanding the importance of discharge from the spinal cord unit as a meaningful step in the rehabilitation path for both patients and their informal caregivers. Orientating healthcare professionals towards a better caregiver involvement during the rehabilitation process. Promoting rehabilitation interventions addressed to the patients and their caregivers concerning supportive communication strategies as well as providing meaningful information, psychological and social support, educational intervention besides the physical aspects of care. Understanding SCI survivors caregivers' needs can assist healthcare professionals in planning and improving taking charge of this core aspect of nursing care.

Please choose payment method:

(PDF emailed within 0-6 h: $19.90)

Accession: 058116027

Download citation: RISBibTeXText

PMID: 25858628

DOI: 10.3109/09638288.2015.1031287

Related references

Sudden informal caregivers: the lived experience of informal caregivers after an unexpected event. Journal of Clinical Nursing 20(17-18): 2448-2457, 2011

Promoting participation of informal caregivers in the hospital care of the elderly patient: informal caregivers' perceptions. Journal of Advanced Nursing 23(5): 942-947, 1996

The lived experiences of stroke caregivers three months after discharge of patients from rehabilitation hospitals. Professioni Infermieristiche 69(2): 103-112, 2017

The experiences of suffering of palliative care informal caregivers in Malaysia: a thematic analysis. American Journal of Hospice and Palliative Care 30(5): 473-489, 2013

The interaction between informal cancer caregivers and health care professionals: a survey of caregivers' experiences of problems and unmet needs. Supportive Care in Cancer 23(6): 1719-1733, 2015

Gaining confidence and perspective: a phenomenological study of mothers' lived experiences caring for infants at home after neonatal unit discharge. Journal of Advanced Nursing 68(9): 2008-2020, 2012

The lived experience of informal African American male caregivers. American Journal of Men's Health 3(1): 16-24, 2009

The influence of social support on the lived experiences of spinal cord injured sportsmen. Sport Psychologist 17(2): 135-156, 2003

Continuity of the self in later life: perceptions of informal caregivers. Qualitative Health Research 14(6): 792-815, 2004

Economic valuation of informal care: conjoint analysis applied in a heterogeneous population of informal caregivers. Value in Health 11(7): 1041-1050, 2008

"I do the best I can": caregivers' perceptions of informal caregiving for older adults in Belize. International Journal of Aging and Human Development 72(1): 1-25, 2011

Aerobic capacity, orthostatic tolerance, and exercise perceptions at discharge from inpatient spinal cord injury rehabilitation. Archives of Physical Medicine and Rehabilitation 94(10): 2013-2019, 2013

Understanding the risks of recent discharge: the phenomenological lived experiences--“existential angst at the prospect of discharge”. Crisis 33(1): 21-29, 2012

Burdens and coping strategies of informal caregivers. The perspective of informal caregivers. Zeitschrift für Gerontologie und Geriatrie 49(2): 138-142, 2016

Delusions and hallucinations in persons with dementia: a comparison of the perceptions of formal and informal caregivers. Journal of Geriatric Psychiatry and Neurology 26(4): 251-258, 2013