Neate Sandra L, Taylor Keryn L, Jelinek George A, De Livera Alysha M, Brown Chelsea R, Weiland Tracey J
Neuroepidemiolgy Unit, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia.
Front Psychol. 2018 Jan 31;9:15. doi: 10.3389/fpsyg.2018.00015. eCollection 2018.
Being in an intimate relationship with a person with multiple sclerosis (MS) may have a substantial impact on the partner's quality of life. Existing research has largely focused on negative impacts of MS for both people with MS (PwMS) and their partners and has sampled the population of partners of PwMS who have primarily adopted standard medical management only. Modifiable lifestyle factors have become increasingly recognized in the management of MS symptoms and disease progression. For partners of PwMS who have undertaken lifestyle modification as an additional strategy to minimize disease progression, the impacts, both positive and negative remain unexplored. This research is unique as it focuses on partners of PwMS who have attempted to adopt major lifestyle interventions outside of the prevailing paradigm of MS management. To explore and interpret the lived experiences of partners of PwMS who have adopted lifestyle modification, to understand partners' attitudes to and experiences of the effect of MS and lifestyle modification on their life, relationship and view of the future. Design: a qualitative, interpretive, phenomenological study using semi-structured interviews.
English-speaking; aged 18 years or more; in a spousal relationship for 12 months or more with a person with MS who had attended a residential lifestyle educational intervention and undertaken lifestyle modification.
Interviews were recorded, transcribed verbatim and thematically analyzed using NVivo™ software. Twenty-one partners were interviewed. This paper reports one of the study's themes, the psychological shift experienced by partners of PwMS. Sub-themes included adaptation; loss and grief; difficult emotions; reframing, re-evaluating and re-prioritizing; hope and optimism; empowerment and taking control; and self-awareness, greater understanding and personal growth. Partners of PwMS who have undertaken lifestyle modification experienced a broad range of psychological adjustments. Whilst reflecting the potential difficulties that partners of PwMS may experience, this group experienced a range of positive psychological changes that add to the literature regarding partners' potential experiences and may provide hope for those in partnerships with people with MS. This study provides themes to potentially inform a quantitative study of a larger population of partners of PwMS.
与多发性硬化症(MS)患者建立亲密关系可能会对伴侣的生活质量产生重大影响。现有研究主要关注MS对患者及其伴侣的负面影响,且所抽取的MS患者伴侣群体主要仅采用标准医疗管理。可改变的生活方式因素在MS症状管理和疾病进展方面越来越受到认可。对于那些已将生活方式改变作为减少疾病进展的额外策略的MS患者伴侣而言,其积极和消极影响仍未得到探索。本研究独具特色,因为它关注的是那些试图在MS管理的主流模式之外采取重大生活方式干预措施的MS患者伴侣。旨在探索和解读采取生活方式改变的MS患者伴侣的生活经历,了解伴侣对MS及其生活方式改变对他们的生活、关系和未来看法的影响的态度和经历。设计:一项采用半结构化访谈的定性、解释性、现象学研究。
讲英语;年龄18岁及以上;与参加过住院生活方式教育干预并进行了生活方式改变的MS患者保持配偶关系12个月或更长时间。
访谈进行录音,逐字转录,并使用NVivo™软件进行主题分析。共采访了21名伴侣。本文报告了该研究的一个主题,即MS患者伴侣所经历的心理转变。子主题包括适应;失落与悲伤;复杂情绪;重新构建、重新评估和重新排序;希望与乐观;赋权与掌控;以及自我意识、更深刻的理解和个人成长。采取生活方式改变的MS患者伴侣经历了广泛的心理调整。虽然反映了MS患者伴侣可能经历的潜在困难,但这一群体经历了一系列积极的心理变化,这为关于伴侣潜在经历的文献增添了内容,并可能为那些与MS患者建立伴侣关系的人带来希望。本研究提供的主题可能为对更多MS患者伴侣进行定量研究提供参考。