Psychological Medicine, Institute of Psychiatry, Psychology & Neuroscience, Kings College London, London, UK.
Global Health Institute, Trinity College Dublin, Dublin, Ireland.
Int J Geriatr Psychiatry. 2024 Nov;39(11):e70010. doi: 10.1002/gps.70010.
Individuals with neurodevelopmental and/or neurocognitive disorders (NNDs) have complex, long-term care needs. In Bangladesh, India, and Pakistan, informal carers shoulder the responsibility and strain of providing care for people with NNDs. Intense care demand, societal and cultural care expectations, and lack of support infrastructure often lead to psychosocial strain in this inadequately researched community, particularly during crises such as the COVID-19 pandemic. This study explored and identified specific features of the coping styles exhibited by informal carers of people with NNDs from Bangladesh, India, and Pakistan during the COVID-19 pandemic.
Between June and November 2020, 245 carers in India, Pakistan, and Bangladesh responded to open-ended questions in the CLIC (Coping with Loneliness, Isolation, and COVID-19) survey. A reflexive thematic analysis was conducted to uncover the underlying themes and identify coping strategies and stressors. A frequency analysis was performed to examine the associations between these themes and carer nationality. Significant tests identified coping styles.
We identified three coping styles: religiosity (Pakistan), caregiving as a natural life path (Bangladesh), and self-care (India). The religiosity and natural life path styles reside on the fatalism/acceptance continuum and suggest an insight-oriented therapeutic approach. Self-care is a problem-solving strategy that calls for a behaviorally oriented approach. Family overreliance on the carer was a concern across all three groups.
The findings underscore the need for accessible support pathways to sustain care standards, ensuring the well-being of carers and care recipients.
患有神经发育和/或神经认知障碍（NND）的个体需要复杂的长期护理。在孟加拉国、印度和巴基斯坦，非正式护理者承担着为 NND 患者提供护理的责任和压力。强烈的护理需求、社会和文化护理期望以及缺乏支持基础设施，往往会导致这个研究不足的社区出现心理社会压力，尤其是在 COVID-19 大流行等危机期间。本研究探讨并确定了来自孟加拉国、印度和巴基斯坦的 NND 患者非正式护理者在 COVID-19 大流行期间表现出的应对方式的具体特征。
2020 年 6 月至 11 月期间，245 名护理者在印度、巴基斯坦和孟加拉国对 CLIC（应对孤独、隔离和 COVID-19）调查中的开放式问题做出了回应。采用反思性主题分析来揭示潜在主题，并确定应对策略和压力源。对这些主题与护理者国籍之间的关系进行了频率分析。显著检验确定了应对方式。
我们确定了三种应对方式：宗教信仰（巴基斯坦）、照顾是自然的生活道路（孟加拉国）和自我照顾（印度）。宗教信仰和自然生活道路的风格位于宿命论/接受的连续体上，暗示了一种以洞察力为导向的治疗方法。自我照顾是一种解决问题的策略，需要采用行为导向的方法。家庭对护理者的过度依赖是所有三个群体都关心的问题。
这些发现强调了需要建立可访问的支持途径来维持护理标准，确保护理者和护理接受者的福祉。
