The role and importance of self-care in the continuum of health care are becoming important subjects of debate among social scientists and health professionals. Interest in the self-care component of health services is stimulated by the convergence of diverse pressures common to health services systems. Depersonalized medical care, rising costs of high technology, focus on curative care, growth of lay knowledge, recognition of the limits of medical care, and documentation of the impact of the individual’s health behavior on patterns of morbidity are all factors stimulating new thinking regarding the importance of individuals and families to the effective and efficient functioning of health service systems.
1.1 Concept and Rationale for Self-care
The role and importance of self-care in the continuum of health care are becoming important subjects of debate among social scientists and health professionals. Interest in the self-care component of health services is stimulated by the convergence of diverse pressures common to health services systems. Depersonalized medical care, rising costs of high technology, focus on curative care, growth of lay knowledge, recognition of the limits of medical care and documentation of the impact of the individual’s health behavior on patterns of morbidity are all factors stimulating new thinking regarding the importance of individuals and families to the effective and efficient functioning of health service systems.
The National Center for Health Services Research (NCHSR) organized the first national-level meeting in the USA on this topic in 1976. One of the conclusions was that baseline studies on the current extent of self-care practice were needed. The premise underlying the first international symposium on the role of the individual in primary health care held at the Institute of Social Medicine, University of Copenhagen, in 1975 was that a viable preventive and therapeutic partnership between individuals, patients and families, and professional healthcare workers is not only desirable, but may be essential to achieve improved access, enhanced quality of care, better accountability, and lower costs .
People have been practicing self-care for millennia, but new products, information, and technologies are changing how health services are delivered. The provider-to-receiver model that is at the heart of many health systems must be complemented with a self-care model through which people can be empowered to prevent, test for, and treat diseases themselves. A clear solution is to work toward universal health coverage (UHC), which not only improves health outcomes, but can help to reduce poverty, promote gender equality, and protect the most vulnerable populations. UHC is a people-centered approach that views people as active decision-makers in their own health and not merely passive recipients of health services. A people-centered approach supports health literacy so that people can take charge of their own health with evidence-based self-care interventions. When people have agency and autonomy, they can make and enact decisions in all aspects of their lives, including in relation to sexuality and reproduction.
Today, at least half the world’s people have no access to essential health services, including 214 million women of reproductive age in developing countries who want methods to avoid pregnancy. An estimated 22 million unsafe abortions occur worldwide each year, more than one million sexually transmitted infections are acquired every day, and worldwide, the number of new HIV infections among young people is not declining .
1.2 Framework for Self-care
A comprehensive approach to sexual and reproductive health and rights (SRHR) covers maternal and perinatal health, family planning, infertility, abortion, sexually transmitted infections (STIs) including HIV, reproductive system cancers, gynecological morbidities, and sexual health, as well as several cross-cutting themes such as gender-based violence.
Within the framework of WHO’s definition of health, as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity, sexual and reproductive health (SRH) addresses sexuality and sexual relationships as well as the reproductive processes, functions, and system at all stages of life. Ensuring the full implementation of human rights-based laws and policies through SRH programs is fundamental to health and rights. Implicit in this are a wide range of human rights relating to SRH including the rights of men and women to have pleasurable and safe sexual experiences free of coercion, discrimination and violence, the right to be informed of and have access to safe, effective, affordable, and acceptable methods of fertility regulation of their choice, and the right of access to appropriate health services that will enable women to go safely through pregnancy and childbirth and provide couples with the best chance of having a healthy infant.
Some examples include health promotion activities (e.g., voluntary family planning, self-testing for HIV other STIs or pregnancy, or seeking advice and information through mHealth); disease prevention and control activities (e.g., practicing safe sex when condoms are consistently and correctly used to prevent unintended pregnancy and STIs, including HIV); and self-treatment and medication (e.g., contraception, self-management of abortion by taking oral misoprostol, or self-administered antibiotics made available without prescription through pharmacies to treat STIs) .
The WHO Constitution states that: “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition” . In order to ensure that WHO normative guidelines support the realization of the right to health of all, it is fundamental to their development that equity, human rights, gender, and the social determinants of health are taken into consideration. In the case of self-care intervention it is, therefore, essential to place particular emphasis on the needs of populations who may neither be aware of their right to health nor be able to access the services they need. These include vulnerable, marginalized, and socio-economically underprivileged populations who have the poorest health outcomes globally.
Vulnerability depends on the context and can be experienced across diverse populations including, but not limited to, individuals who: are lesbian, gay, bisexual, transgender, or intersex; use or have used drugs; are or have been involved in sex work; are separated, divorced or widowed; have undergone female genital mutilation (FGM); are living with HIV, tuberculosis (TB), malaria, hepatitis B or C, and/or other infections; are currently or have previously been incarcerated, detained or homeless; are economic or political migrants; are living with disabilities, including learning disabilities; are from minority ethnic groups; are elderly with reduced intrinsic capacity and/or are adolescents.
The World Health Organization’s working definition of self-care includes “the ability of individuals, families and, communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health-care provider.” While this is a broad definition that includes many activities, it is important for self-care, especially where it intersects with health systems and health professionals. The recent global conference on primary health care, which celebrated the 40th anniversary of the Alma Ata declaration, again underscored the importance of empowering and supporting people in acquiring the knowledge, skills, and resources needed to maintain their health or the health of those for whom they care .
In recent years, the market for drugs, devices, and diagnostics has significantly increased globally. Digital technologies have also increased rapidly and are continuing to do so. This is resulting in new configurations of self-care. The impact of these changes on programs and policies needs to be understood.
Individuals choose a self-care health intervention for many positive reasons including convenience, cost, empowerment, and a better fit with values or lifestyle. A proven efficacy and endorsement by the health system may be another reason to choose self-care interventions. Given that an ideal, well-functioning health system is seldom a reality, particularly in resource-constrained settings, individuals may also opt for self-care interventions to avoid the health system owing to poor quality services or because information, interventions, or products are inappropriate, unaffordable, or inaccessible. Stigma from healthcare providers or from within families and communities may be another reason people turn to self-care. Self-care interventions fulfill a particularly important role in these situations, as the alternative might be no access at all to health promoting interventions .
The conceptual framework for self-care acknowledges that while there are traditional self-care practices, people are accessing new information and products through a variety of channels including pharmacies and the Internet. There is a phenomenal increase in mobile technologies and digital health for self-care. An enabling policy and legal environment that is supportive and safe is also essential for the implementation of safe and high-quality self-care interventions .
Some self-care interventions such as condoms are fully controlled by the individual. Others require interaction with the health service system. For example, HIV self-testing requires confirmation by the health system. Others such as HPV self-testing require the health system to do the test. Thus, the support of the health system is needed for implementing some self-care interventions.
Self-care is especially important for vulnerable populations because they are unable to access the health service system primarily because they are stigmatized by healthcare providers. This is especially true in the case of services for sexual and reproductive health and rights because vulnerable populations do not have the autonomy over their bodies to make decisions about sexuality and reproduction.
1.3 WHO Guideline on Sexual and Reproductive Health and Rights
In 2019, WHO issued a guideline on sexual and reproductive health self-care interventions. The guideline addresses a wide range of issues including antenatal care, childbirth, postpartum and newborn care, family planning, safe abortion, STIs including HIV, and sexual health. The purpose of the guideline is to provide people-centered, evidence-based guidance to individuals, communities, and countries to promote quality health services and self-care interventions based on public health strategies. Evidence-based self-care recommended by WHO includes information on sexual and reproductive health issues as well as on ways in which individuals can obtain drugs and devices. Many diagnostics and digital products can be used with or without the direct supervision of a health provider. Some examples are self-injectable contraceptives, self-sampling kits, and HIV self-tests .
Ensuring an enabling environment in which self-care interventions can be made available in safe, and appropriate ways must be a key initial piece of any strategy to introduce or scale-up these interventions. This should be informed by the profile of potential users, the services on offer to them, the broader legal and policy environment, and structural support and barriers .
Marginalized and vulnerable communities including lesbian, gay, bisexual, and transgender (LGBT) communities, truck drivers, female sex workers, HIV positive people, among others, have social, economic, and political problems which result in health consequences. These communities suffer from stigma and discrimination. Because of their economic conditions and cultural beliefs, they have little access to formal healthcare services. Their basic human rights are violated, and they face discrimination in society as well as in the health system. For example, people with same-sex preferences are ridiculed and ostracized by their families and also by society. While health programs may achieve their goals by improving the well-being of easy-to-reach communities, they may exacerbate inequality if hard-to-reach populations are left behind. There is ample evidence to show that LGBT communities are hard-to-reach [7,8,9]. Therefore, it is important to undertake research to capture their self-care practices, values, and preferences, especially with regard to SRHR and HIV prevention.
In line with the WHO conceptual framework for self-care interventions, there are two complimentary pathways of change to improve health and well-being: increasing autonomy and agency through empowering individuals, particularly vulnerable populations, to advance SRHR; and transforming the health system approach to create a safe and supportive enabling environment to serve vulnerable populations. In line with the process of the development of WHO global normative guidance on self-care interventions, continued engagement of healthcare providers as well as the self-careers and care-givers has the potential to transform ad hoc activities into policies and programs for implementation that improves SRH, human rights, and UHC .
1.4 Sole Reliance on Self-care for Preventing COVID-19
The COVID-19 pandemic currently raging through India and several other countries vividly underscores the importance of self-care interventions. All the methods to prevent this infection such as hand washing, social/physical distancing, and wearing masks are self-care interventions. Without a vaccine to prevent this infection, individuals and communities are reliant solely on self-care practices. The COVID-19 pandemic has made both healthcare practitioners and users of health services cognizant of the critical need for promoting and scaling-up self-care interventions. Serious efforts are underway globally to achieve this goal. WHO has developed a communication media tool kit and a social media kit for sexual and reproductive health and COVID-19 .
The problem of waste management of self-care products needs redressal . Significantly exacerbated by the COVID-19 pandemic, the problem of waste management needs to be better understood so that effective and sustainable strategies can be implemented to manage the uncontrolled growth of self-care waste.
1.5 Innovative Research Methodology
In this volume, four case studies are presented. These case studies include the results of research undertaken on vulnerable and marginalized communities in several different states of the country. Qualitative research was undertaken on men who have sex with men (MSM), transgender, female sex workers (FSWs), and long-distance truck drivers. Research questions addressed their perceptions and experience with self-care, their sources of information, their motivations for using self-care, the barriers they encountered, and the mechanisms they employed when self-care failed.
Quotes are generously used to amplify the voices of the members of these marginalized and vulnerable communities. Research results are supplemented with literature reviews. In addition, personal narratives of community members provide invaluable insights into their lived experience.
The case studies discuss the evolution of self-care interventions and their impact on the health of the community, in particular on sexual and reproductive health and HIV prevention. These also include a discussion of reproductive rights which are seriously violated in these communities. Issues related to stigma and discrimination and violence among these communities are highlighted. And finally, factors that resulted in changes in policies and programs to improve their sexual and reproductive health and grant them the right to health, education and employment are discussed. The case studies provide an understanding of what worked and what did not in mobilizing and empowering these vulnerable communities.
In addition to the research, a number of workshops were organized in several states of India to provide a platform for discussion for these communities. At these workshops, the community members expressed their perceptions of self-care interventions and their experience in using them. They also shared the difficulties and obstacles that they faced and their motivations for using self-care services and products. Artwork by the community members illustrated the communities’ need for and experience with self-care. Research ethics and confidentiality were strictly adhered to during the research. Thus, novel, creative, and innovative methodologies were employed to study these hard-to-reach communities.
In the following four chapters, the case studies on MSM, transgender, FSWs, and long-distance truck drivers are presented. The last chapter examines how the agenda on self-care can be advanced in the years ahead.
The audience for this publication includes health professionals, those managing health institutions and service providers. Researchers, donors, and professionals in the field of information technology would also find these writings of value in their work. Since this volume discusses a subject that is of interest to the general public and is written in an easy-to-read style, it would attract broader audiences, especially potential users of self-care interventions.
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Pachauri, S., Pachauri, A., Mittal, K. (2022). Self-care: Concept, Rationale, and Framework. In: Sexual and Reproductive Health and Rights in India. SpringerBriefs in Public Health. Springer, Singapore. https://doi.org/10.1007/978-981-16-4578-5_1
Publisher Name: Springer, Singapore
Print ISBN: 978-981-16-4577-8
Online ISBN: 978-981-16-4578-5