Ramasamy Thendral, Veeraiah Surendran, Balakrishnan Kalpana
Department of Anaesthesia and Pain and Palliative Care, Chennai, Tamil Nadu, India.
Department of Department of Psycho-Oncology, Cancer Institute (WIA), Chennai, Tamil Nadu, India.
Indian J Palliat Care. 2021 Oct-Dec;27(4):503-512. doi: 10.25259/IJPC_76_21. Epub 2021 Nov 25.
This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context.
Burden and QOL of caregivers ( = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers ( = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data.
Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver's appraisal of caregiving and (4) caregiver's perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20).
Caregiving impacts the physical, emotional, financial and social aspects of caregiver's life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.
本研究旨在探讨晚期头颈癌患者主要照料者所面临的心理社会问题，主要目的是了解他们在社会背景下的经历。
分别使用 Zarit 照料负担访谈量表和照料者生活质量指数-癌症版（CQOLC）对 15 名照料者的负担和生活质量进行量化。使用半结构化访谈提纲对 10 名主要照料者进行访谈。采用主题分析法分析定性数据，定量数据使用描述性统计方法。
出现了四个主要主题：（1）照料的影响，（2）应对照料，（3）照料者对应照料的评价，（4）照料者对疾病的认知。大多数（73.3%）照料者的生活质量低于 100。CQOLC 的平均得分是 73.07（标准差 24.17），大多数（46.7%）照料者报告有轻度至中度负担，而 27%的照料者负担很小或没有负担。ZBI 的平均得分是 32.4（标准差 18.20）。
照料会影响照料者生活的身体、情感、经济和社会方面。照料者采取积极的应对策略来克服照料的影响。家庭是印度照料者应对情感压力的主要力量来源。照料者的文化信仰和价值观会影响他们对应照料情况的评价。大多数照料者经历了轻度至中度负担，而大多数照料者的生活质量得分较低。
