Achutha Menon Centre for Health Science Studies, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, Thiruvananthapuram, Kerala, India.
Int J Equity Health. 2024 May 7;23(1):92. doi: 10.1186/s12939-024-02155-x.
Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues.
We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews.
Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this.
In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.
在喀拉拉邦，家庭护理人员对于身患重病的人员的长期护理至关重要。长期护理和老龄化可能会给患者和护理人员带来负担和不利影响。我们比较了老年护理人员和年轻护理人员的护理人员负担和生活质量。我们还探讨了姑息治疗护士对家庭护理人员问题的看法。
我们进行了一项混合方法研究，重点关注两个组：（i）在喀拉拉邦科拉姆区五个随机选定的潘查亚特（印度三级地方自治系统中最外围的一级，负责管理村庄或小镇）的 221 名姑息治疗患者的护理人员中进行了三次深入访谈和横断面调查，作为开发和验证 Achutha Menon 中心护理人员负担清单的一部分；（ii）对 5 名来自初级姑息治疗护士的进行了 5 次深入访谈，作为地方政府和姑息治疗研究的一部分。我们使用结构访谈表收集了社会人口统计学和护理相关特征、护理人员负担和健康相关生活质量的横断面数据，使用 EuroQol EQ5D5L 并根据参与者类型为定性访谈定制了有关护理人员问题的访谈指南。
老年护理人员占样本的 28.1%，他们的健康和生活质量状况明显较差。经历护理人员负担的高级护理人员的平均得分最低，为 0.877（标准差（SD）为 0.066，95%置信区间（CI）为 0.854-0.899），其次是高负担的年轻护理人员（0.926，SD 为 0.090，95%CI 为 0.907-0.945）、低负担的老年护理人员（0.935，SD 为 0.058，95%CI 为 0.912-0.958）和低负担的年轻护理人员（0.980，SD 为 0.041，95%CI 为 0.970-0.990）。护理人员面临身体、心理、社会和经济问题，导致护理人员负担过重。姑息治疗护士与家庭护理人员之间的关系复杂，护士认识到护理人员负担问题，但没有具体的干预措施来解决这一问题。
在我们来自喀拉拉邦科拉姆的研究中，有十分之三的姑息治疗患者的护理人员年龄在 60 岁或以上。他们的健康相关生活质量明显较低，特别是如果他们感到护理人员负担过重。尽管姑息治疗护士认识到了这一点，但并没有系统地解决护理人员的问题。必须进一步研究和制定适当的干预措施，以解决喀拉拉邦姑息治疗方案中的这些问题。
