School of Health & Social Sciences, Napier University, Edinburgh, EH10 5LG, UK.
Psychol Health. 2010 Nov;25(9):1101-20. doi: 10.1080/08870440903038949.
This study aimed to explore the lived experience of assuming the primary caregiver role in a group of spouses of individuals living with a traumatic spinal cord injury (SCI) (injuries ranged from paraplegia to quadriplegia). Individual in-depth interviews were conducted with 11 participants who were both the spouse and primary caregiver of an individual with a SCI; of these, 10 were female and 1 was male. All interviews were transcribed verbatim and were subjected to interpretative phenomenological analysis (IPA). Here we present three inter-related master themes: 'The emotional impact of SCI'; 'Post-injury shift in relationship dynamics' and 'Impact of caregiving on identity'. Regarding the emotional impact of spinal injury, participants reported an almost instantaneous sense of loss, emptiness and grief during the injured person's rehabilitative period and feelings of anxiety were reported in anticipation of their return to the family home. A distinct change in role from spouse and lover to care provider was reported and this ultimately contributed to relationship change and a loss of former identity. The findings are discussed in relation to extant caregiver literature and recommendations for future caregiver support are highlighted.
本研究旨在探讨一组外伤性脊髓损伤（SCI）患者配偶作为主要照顾者的生活体验（损伤范围从截瘫到四肢瘫痪）。对 11 名既是 SCI 患者配偶又是主要照顾者的参与者进行了个体深入访谈；其中 10 名女性，1 名男性。所有访谈均逐字转录，并进行了解释性现象学分析（IPA）。这里呈现了三个相互关联的主要主题：“SCI 的情感影响”；“受伤后关系动态的转变”和“照顾对身份的影响”。关于脊髓损伤的情感影响，参与者报告说，在受伤者康复期间，他们几乎立即感到失落、空虚和悲伤，并且在他们返回家庭时感到焦虑。报告称，从配偶和爱人到照顾者的角色发生了明显的转变，这最终导致了关系的变化和以前身份的丧失。研究结果与现有的照顾者文献进行了讨论，并强调了对未来照顾者支持的建议。
