Experiences of Informal Carers for People with Parkinson's During UK Lockdowns and after Lockdown Ended, 2021-2022

When COVID-19 emerged, lockdowns were implemented to restrict the rate of transmission. Early findings have shown the extent this action had on the wellbeing of the general population. However, it was expected the impact was more pronounced on individuals living with chronic illness, or those supporting them. This study aimed to longitudinally understand the effects of lockdown on carers of people living with Parkinson’s, and how their experiences evolved after lockdown ended. Nine participants (3 male, 6 female, aged 64-79) were recruited through Parkinson’s UK and a university Parkinson’s Research Database. Participants were interviewed via telephone on two occasions: the first occasion participants discussed their experiences of lockdowns (from March 2020 to June 2021) in relation to supporting their spouse as well as their own challenges. In the second interview (completed five months after the first round of interviews) participants reflected on their experiences of life post-lockdown and the effects lockdown had on their reintegration into society. Using interpretative phenomenological analysis, four themes emerged from participant interviews: (i) Lockdown-induced revolution and evolution of relationship dynamic with spouse; (ii) Fighting to be seen, heard, and understood in healthcare encounters; (iii) Making sense of, and adapting to, risk in a time of COVID-19; and (iv) Isolated and needing support during and after lockdown. Themes are illustrated with data excerpts from both data collection points. Findings show that a perceived sense of control and access to Parkinson’s support were central factors that shaped both participants’ experiences of managing during lockdown and their beliefs surrounding their relationship dynamic with their spouse post-lockdown .

新型冠状病毒肺炎（COVID-19）暴发初期，各国实施封锁措施以限制病毒传播速率。早期研究已揭示此类管控举措对普通民众身心健康的影响程度，但已有研究推测，该影响在慢性病患者或其照料者群体中更为显著。本研究旨在纵向探究封锁措施对帕金森病（Parkinson’s）患者照料者的影响，以及封锁结束后其照料体验的演变历程。研究通过英国帕金森病协会（Parkinson’s UK）及某高校帕金森病研究数据库招募了9名参与者（3名男性、6名女性，年龄64至79岁）。研究分两次通过电话对参与者进行访谈：首次访谈中，参与者分享了2020年3月至2021年6月封锁期间照料配偶的相关经历，以及自身面临的困境；第二次访谈于首轮访谈结束5个月后开展，参与者回顾了封锁解除后的生活体验，以及封锁措施对其重新融入社会造成的影响。本研究采用解释现象学分析（interpretative phenomenological analysis）对访谈资料进行编码，最终从参与者访谈中提炼出四大主题：（一）封锁催生配偶间关系模式的变革与演进；（二）在医疗照会中争取被看见、被倾听与被理解；（三）在新冠疫情背景下认知并适应风险；（四）封锁期间及解除后均陷入孤立，亟需支持。所有主题均辅以两次数据收集阶段的访谈片段加以说明。研究结果显示，感知掌控感与帕金森病相关支持资源的可及性，是影响参与者封锁期间照料应对体验，以及封锁后配偶间关系模式认知的核心因素。