Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan

Abstract

Background Limited comprehension of the concept of palliative care and misconceptions about it are barriers to meaningful utilisation of palliative care programs. As caregivers play an integral role for patients with terminal illness, it is necessary to assess their perceptions and attitudes towards the palliative care approach. Method A cross-sectional survey was conducted. Data was collected from the Aga Khan Hospital in-patient and out-patient departments and home-based palliative care services. All adult caregivers who met the inclusion criteria and consented, completed a questionnaire till the sample size was reached. Univariate and multivariate multivariable analysis was done and results were reported as crude prevalence’s, crude and adjusted prevalence ratios with 95% confidence intervals using Cox-proportional hazard algorithm. Mean difference of knowledge and attitude scores by caregiver variables were assessed using one-way ANOVA. SPSS version 18 was used and a p-value of less than 5% was treated as significant. Results Out of 250 caregivers more than 60% were 40 years or less, majority were males and at least graduates. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had enhanced understanding about palliative care. Individuals under 40 years old, those with an education level of at least grade 10, children or relatives were found to have significantly more enhanced knowledge about palliative care. The majority believed that the patient should be informed about the diagnosis and should be facilitated to carry out routine activities and fulfill their wishes. Conclusion Nearly half of the caregivers had enhanced understanding of the palliative care approach. They showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that palliative care should be offered to everyone suffering from a terminal illness and, secondly, that this approach encompasses not just physical, but also psychological and social needs of the patient and the family. These findings will help inform the establishment of a palliative care program that fills the gaps in comprehension and knowledge of caregivers.

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“…If the patient remained in hospital, many of these costs would be absorbed by the government, including expenses related to medical equipment, special meals, renovations to accommodate disabilities, repairs and in some instances, prescription and non-prescription drugs. However, Canada has also just introduced legislation that will expand the availability of medical equipments at all levels of the hospital (Shah et al, 2020).…”

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“…The higher the grade of the hospital, the better the knowledge of CPC, which is consistent with the results of many similar studies. [33][34][35] The higher the grade of the hospital, the more obvious the geographical advantage. For example, provincial hospitals' regulations, cultural environment and medical resources are better than those of municipal hospitals, and they accept more critically ill children; therefore PHWs can have more opportunities to carry out palliative care.…”

Palliative care in Pakistan: patients endure in agony

“…A survey of the PC facilities around the world, conducted by The International Observatory at the End of Life Care (IOELC), reported a very unfavorable outcome in Pakistan, in terms of PC provision, with only one service identified for a population of ~160 million [4] . A 2017 study monitoring the global development of PC, placed Pakistan in category 3a, based on the remote provision of PC [5] . Despite being the sixth most populated country in the world, Pakistan has been ranked among the bottom 5 countries in terms of gross domestic product allocation to health expenditure.…”

“…Not only is the understanding of the situation limited, but the research in this relatively new field is also limited. Lack of comprehension of the concept and scope of PC and misapprehensions about it in both patients and caregivers are major obstacles in the adaptation and utilization of this approach [5] . For instance, the use of opioids and other controlled drugs is common for pain relief in PC, however, for decades, the health community has struggled to overcome the taboo regarding their use; especially morphine, as not just the public but also many physicians, associate it with criminal, immoral, hedonistic, or even suicidal behavior [6] .…”

“…Given the aforementioned circumstances, it is imperative to develop and integrate PC into health systems [5] . Pain management should be an integral part of medical education at all levels be it undergraduate or postgraduate allowing the young doctors of the country to learn not just the best but all the methods available to manage their patients' pain [8] .…”