Covid take aways
WORLDWIDE, 349 million people are estimated to be care dependent, of whom 18 million (5%) are children under 15 years and 101 million (29%) are older people with above 60 years of age. (source: WHO statistics 2017).
In most countries, the primary care for physically disabled people is provided by close relatives.
The family care-givers, majority being women, might be supporting an aged parent, a disabled child, or a spouse with a chronic illness by assisting them with everyday activities.
They provide a significant portion of health and support services to individuals with serious illnesses but are often overlooked by existing health care systems.
Family care-givers cannot easily share important clinical or social information with other care providers or receive the necessary information to effectively support their loved ones.
Recent changes in health care practices, such as shorter hospital stays, increasingly complex disease management, and more frequent management of chronic illnesses at home, have shifted the responsibility for many medical tasks to these family care-givers.
In a recent survey (conducted by Bahria University, 2021), 91% of the informal care-givers said that they perform at least one type of medical or nursing task for a family member, 59% of the care-givers had difficulty in handling the equipments, 91% said that there is a need for 24/7 remote professional healthcare system for family care providers, 100% felt mentally exhausted, 85% think that community support programs will be beneficial for their mental health, 91% felt overworked and 97% appreciated the idea of having an alternate affordable and trusted care provider for a few hours or days.
Having a dependent person in the family means that at least two of the persons in the family are unable to work; the dependent person and his care-giver; hence increasing the economic burden on the family.
COVID-19 has dramatically altered care-giving worldwide. To reduce the risk of COVID-19 infection, homes have become the default setting for both medical care and long-term care, and family members have become frontline workers.
It is more crucial than ever to support family care-givers who may be assuming increasingly heavy responsibilities, including providing medical care.
However, helping family care-givers without involving the formal care team can have only limited benefits, especially for the many adults with complex health care needs.
Apparently, there is a huge information gap between formal care-givers and the informal care-givers that needs to be bridged.
COVID-19 has changed the dynamics of medical practices and some of these changes are positive.
A few of the policies enacted temporarily to address the challenges of family care-giving during COVID-19 could be made permanent.
A recent survey of care-givers indicated that 50% have used tele-health service to provide ongoing assistance to loved one, since the COVID-19 outbreak began in early 2020 (Associated Press-NORC Center for Public Affairs Research, 2020).
The tele-care services need to be further expanded to support the family care-givers in taking care of their family members more effectively, even after the pandemic is under control.
Another facility that needs permanence is the virtual evaluation of the patients by healthcare professionals at the hospitals.
In most of the cases, it is extremely difficult for the care-giver to take the patient to the hospital due to old age or disability.
In such cases, the caregivers should have the option for virtual evaluation of the patient from the relevant medical practitioner using the internet.
Mobile Apps could be developed by the hospitals to coordinate and perform these evaluations.
There is a lot of room to develop enhanced technology through which family care-givers interact with the formal care teams.
A standardized information system could also be developed where care-givers can log data of the patients that can be shared with a medical practitioner as and when needed.
Considering all the misleading information available on the internet, the care-givers also need to have access to authentic information sources about various diseases which can be made part of the said system.
Evidence shows that family caregivers of people with severe declines in capacity are at high risk of experiencing psychological distress, anxiety and depression.
Developing community support centers where the family care-givers can communicate to other people in similar roles will have a direct impact on the betterment of their psychological health.
Providing care can be burdensome and can detract the care-giver from being productive.
Consequently resulting in breeding frustration for all parties, undermining the quality of care provided, and generating adverse physical/ mental health consequences for both caregivers and recipients.
In a developing country like Pakistan, affordable Respite Care Centers need to be created throughout the country under the government’s patronage, which can provide relief to the family care-givers for a few hours to a few weeks.
This shall provide physical and mental relief to the care-giver for a limited amount of time.
The Respite Centers are currently available in only major cities of Pakistan and their charges are unaffordable for majority of the population. They need to be regulated by the government.
The pandemic has provided a new perspective on how to address core challenges in family care-giving.
However, these challenges are not unique to COVID-19—the pandemic only served to raise their profile.
COVID-19 has required radical changes in multiple areas of health care, including new approaches for communication and new ways to use technology.
These innovations are being subjected to rigorous real-world testing as providers use technology to deliver a wider variety of services.
No one would have chosen a pandemic to demonstrate the value of technology in health care delivery.
However, we can seize the opportunity to learn and profit from what it has taught us.
Those lessons will still have value—perhaps increased value—once COVID-19 is tamed.
—The writer is a M Phil scholar, based in Islamabad.