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Abstract
Adolescents (10-19-years-old) account for almost 10% of the annual global tuberculosis
(TB) incidence. Adolescents’ experiences of TB care, TB stigma, and the consequences
of TB for their relationships, schooling, and mental health are different, and often
more severe, compared to younger children and adults. How TB impacts the lives of
adolescents is not well described or understood. We aimed to locate adolescents’ experiences
of TB relative to their psychosocial contexts, describe the impact of TB on adolescents’
wellbeing, and describe how TB and its treatment affects their socio-familial contexts.
Teen TB was a prospective observational cohort study which recruited 50 adolescents
with newly diagnosed TB disease (including both multidrug-resistant TB and drug-susceptible
TB) in Cape Town, South Africa. A nested sub-sample of 20 adolescents were purposively
sampled for longitudinal qualitative data collection. Nineteen participants completed
all qualitative data collection activities between December 2020 and September 2021.
Adolescents described their communities as undesirable places to live—rife with violence,
poverty, and unemployment. The negative experiences of living in these conditions
were exacerbated by TB episodes among adolescents or within their households. TB and
its treatment disrupted adolescents’ socio-familial connections; many participants
described losing friendships and attachment to family members as people reacted negatively
to their TB diagnosis. TB, inclusive of the experience of disease, diagnosis and treatment
also negatively impacted adolescents’ mental health. Participants reported feeling
depressed, despondent, and at times suicidal. TB also disrupted adolescents’ schooling
and employment opportunities as adolescents were absent from school and college for
substantial periods of time. Our findings confirm that adolescents’ psychosocial experiences
of TB are often highly negative, compounding underlying vulnerability. Future research
should prioritize exploring the potential of social protection programmes providing
adolescents and their families with psychosocial and economic support.
Adolescence is the phase of life stretching between childhood and adulthood, and its definition has long posed a conundrum. Adolescence encompasses elements of biological growth and major social role transitions, both of which have changed in the past century. Earlier puberty has accelerated the onset of adolescence in nearly all populations, while understanding of continued growth has lifted its endpoint age well into the 20s. In parallel, delayed timing of role transitions, including completion of education, marriage, and parenthood, continue to shift popular perceptions of when adulthood begins. Arguably, the transition period from childhood to adulthood now occupies a greater portion of the life course than ever before at a time when unprecedented social forces, including marketing and digital media, are affecting health and wellbeing across these years. An expanded and more inclusive definition of adolescence is essential for developmentally appropriate framing of laws, social policies, and service systems. Rather than age 10-19 years, a definition of 10-24 years corresponds more closely to adolescent growth and popular understandings of this life phase and would facilitate extended investments across a broader range of settings.
In 2015, all the member states of the United Nations signed up to the 2030 Agenda for Sustainable Development and its 17 Sustainable Development Goals (SDGs) [1]. SDG 3 aims to “ensure healthy lives and promote well-being for all at all ages.” Central to this goal are the concepts of health and well-being. This is at least as true for adolescents (10–19 years) as for any other age group. The United Nations Secretary General’s Global Strategy for Women’s, Children’s and Adolescents’ Health (2016–2030), which aims to “ensure health and well-being for every woman, child and adolescent” within the context of the SDGs, recognizes that adolescents will be central to the overall success of the strategy [2]. Similarly, the World Health Organization (WHO)–United Nations International Children’s Fund–Lancet Commission calls for children (defined as <18 years of age) to be at the center of the SDGs [3]. A recent call was also made for Universal Health Coverage to take a comprehensive approach to addressing the health and well-being needs of adolescents [4]. Adolescent well-being is a personal and societal good in its own right, and at the same time, adolescence is a critical period of the life course when many of the factors that contribute to lifelong well-being are, or are not, acquired or solidified. The direct and indirect effects on adolescents’ well-being of the coronavirus disease 2019 pandemic and the responses to it have reinforced the importance of systems being in place to support the well-being of adolescents. But what is adolescent well-being? And how do adolescent well-being and adolescent health relate to each other? As a contribution to answering these questions, the Partnership for Maternal, Newborn & Child Health and the WHO are leading an initiative of the United Nations H6+ Technical Working Group on Adolescent Health and Well-Being to develop a consensus framework for defining, programming, and measuring adolescent well-being [5]. This framework adds to recent work to develop a Nurturing Care Framework for early child development [6]. It is also part of a broader program of work that includes a multistakeholder Call to Action to prioritize adolescent well-being [7], building momentum for a 2022 “Global Summit on Adolescents,” which will review progress and aim to increase political and financial investments for this population group [8]. Many descriptions of well-being have been developed [9]. Two conceptual approaches dominate discussions: subjective and objective well-being. Subjective constructs emphasize personal experiences and individual fulfillment, which include eudaemonic well-being (e.g., finding meaning in life and experiencing a sense of personal growth), hedonic well-being (e.g., feeling happy and being satisfied with one’s own life), as well as others (e.g., optimism) [10,11]. In contrast, objective approaches define well-being in terms of quality of life indicators such as material resources (e.g., income, food, and housing) and social attributes (education, health, political voice, social networks, and connections) [12]. Such objective indicators commonly reflect capabilities, which include both an individual’s functioning and the opportunities provided in a given environment, as argued by Sen [13]. “Relational well-being” emphasizes that an individual’s well-being is heavily influenced by their relationships, with well-being seen as emerging “...through the dynamic interplay of personal, societal, and environmental structures and processes…” [14]. Indicators to measure adolescent well-being reflect these two concepts to differing degrees. Measures of subjective well-being apply indicators such as the subjective well-being measure used in the Gallup World Poll [15] and psychological need satisfaction and frustration scales [16], whereas measures of objective well-being use indicators such as the Global Youth Development Index [17], positive youth development indicators [18], or developmental assets scores [19]. Definition and Framework Based on a scoping of the literature and consultations across the UN H6+ Technical Working Group, youth networks, and adolescent-serving organizations, we propose a short and an expanded definition of adolescent well-being (Box 1 ). We also propose five interconnected domains for adolescent well-being and the requirements for adolescents to achieve well-being within each of these domains (Table 1 ). The five domains encompass both subjective and objective constructs and include health as one of the five domains. The domains are also underpinned by gender, equity, and rights considerations. An individual’s degree of independence to access opportunities that foster their own well-being will vary across the decade of adolescence. Although important at all ages, adolescent well-being may, therefore, require greater adult support at younger ages. Box 1 Definitions Proposed definition of adolescent well-being. Adolescents thrive and are able to achieve their full potential. Expanded definition. Adolescents have the support, confidence, and resources to thrive in contexts of secure and healthy relationships, realizing their full potential and rights. Table 1 The five domains of adolescent well-being that underpin the adolescent well-being framework No. Domain Subdomains Requirements include Type of well-being 1. Good health and optimum nutrition • Physical health and capacities. • Mental health and capacities. • Optimal nutritional status and diet • Information, care, and services: access to valid and relevant information and affordable age-appropriate, high-quality, welcoming health services, care, and support, including for self-care. • Healthy environment: such as safe water supply, hygiene, sanitation and without undue danger of injury in the home, safe roads, management of toxic substances in the home and community, access to safe green spaces, and no air pollution. Skills to navigate the environment safely. • Physical activity: Has access to opportunities for adequate physical activity. • Diet: Has access to local, culturally acceptable, adequate, diversified, balanced, and healthy diet commensurate to the individual's characteristics and requirements, to protect from all forms of malnutrition PhysicalNutritionalEmotionalSociocultural 2. Connectedness, positive values, and contribution to society • Connectedness: Is part of positive social and cultural networks and has positive, meaningful relationships with others, including family, peers, and, where relevant, teachers and employers. • Valued and respected by others and accepted as part of the community. • Attitudes: Responsible, caring, and has respect for others. Has a sense of ethics, integrity, and morality. • Interpersonal skills: Empathy, friendship skills, and sensitivity. • Activity: Socially, culturally, and civically active. • Change and development: Equipped to contribute to change and development in their own lives and/or in their communities. • Connectedness: Has access to opportunities to become part of positive social and cultural networks and to develop positive, meaningful relationships with others, including family, peers, and, where relevant, teachers and employers. • Valued: Has opportunities to be involved in decision-making and having their opinions taken seriously, with increasing space to influence and engage with their environment commensurate with their evolving capacities and stage of development. • Attitudes: Has access to opportunities to develop personal responsibility, caring, and respect for others and to develop a sense of ethics, integrity and morality. • Interpersonal skills: Has access to opportunities to develop empathy, friendship skills, and sensitivity. • Activity: Has access to opportunities to be socially, culturally, and civically active that are appropriate to their evolving capacities and stage of development. • Change and development: Has access to opportunities to develop the skills to be equipped to contribute to change and development in their own lives and/or in their communities. EmotionalSociocultural 3. Safety and a supportive environment • Safety: Emotional and physical safety. • Material conditions in the physical environment are met. • Equity: Treated fairly and have an equal chance in life. • Equality: Equal distribution of power, resources, rights, and opportunities for all. • Nondiscrimination. • Privacy. • Responsive: Enriching the opportunities available to the adolescent. • Safety: Protection from all forms of violence and from exploitative commercial interests in families, communities, among peers and in schools, and the social and virtual environment. • Material conditions: The adolescent's rights to food and nutrition, water, housing, heating, clothing, and physical security are met. • Equity: There is a supportive legal framework and policies and equitable access to valid and relevant information, products, and high-quality services. • Equality: Positive social norms, including gender norms, to ensure equal rights and opportunities for all adolescents. • Nondiscrimination: Free to practice personal, cultural, and spiritual beliefs and to express their identity in a nondiscriminatory environment and have the liberty to access objective, factual information, and services without being exposed to judgmental attitudes. • Privacy: Their personal information, views, interpretations, fears, and decisions, including those stored online, are not shared or disclosed without the adolescent's permission. • Responsive: Has access to a wide range of safe and stimulating opportunities for leisure or personal development. PhysicalEmotionalSociocultural 4. Learning, competence, education, skills, and employability • Learning: Has the commitment to, and motivation for, continual learning. • Education. • Resources, life skills, and competencies: Has the necessary cognitive, social, creative, and emotional resources, skills (life/decision-making) and competencies to thrive, including knowing their rights and how to claim them, and how to plan and make choices. • Skills: Acquisition of technical, vocational, business, and creative skills to be able to take advantage of current or future economic, cultural, and social opportunities. • Employability. • Confidence that they can do things well. • Learning: Receives support to develop the commitment to, and motivation for, continual learning. • Education: Has access to formal education until age 16, and opportunities for learning through formal or nonformal education or training beyond. • Resources, life skills, and competencies: Has opportunities to develop the resources, skills (life/decision-making), and competencies to thrive. • Skills: Has opportunities to develop relevant technical, vocational, business, and creative skills. • Employability: Is given the opportunity to participate in nonexploitative and sustainable livelihoods and/or entrepreneurship appropriate for their age and stage of development. • Confidence: Is given the necessary encouragement and opportunities to develop self-confidence and is empowered to feel that they can do things well. EmotionalCognitive 5. Agency and resilience • Agency: Has self-esteem, a sense of agency and of being empowered to make meaningful choices and to influence their social, political, and material environment and has the capacity for self-expression and self-direction appropriate to their evolving capacities and stage of development. • Identity: Feels comfortable in their own self and with their identity(s), including their physical, cultural, social, sexual, and gender identity. • Purpose: Has a sense of purpose, desire to succeed, and optimism about the future. • Resilience: Equipped to handle adversities both now and in the future, in a way that is appropriate to their evolving capacities and stage of development. • Fulfilment: Feels that they are fulfilling their potential now and that they will be able to do so in the future. • Agency: Has opportunities to develop self-esteem, a sense of agency, the ability to make meaningful choices and to influence their social, political and material environment, for self-expression and self-direction. • Identity: Has the safe space to develop clarity and comfort in their own self and their identity(s), including their physical, cultural, social, sexual, and gender identity. • Purpose: Has opportunities to develop a sense of purpose, desire to succeed, and optimism about the future. • Resilience: Has opportunities to develop the ability to handle adversities both now and in the future, in a way that is appropriate to their evolving capacities and stage of development. • Fulfilment: Has opportunities to fulfill their potential now and to be able to do so in the future. EmotionalCognitive The examples that are given in the subdomains and the requirements to achieve these are illustrative and not exhaustive. Implications for Policy and Practice The definition of adolescent well-being and its five domains applies everywhere and is relevant for all adolescents, including males and females, wealthy and poor, and the able-bodied and those with chronic disability, for example. They also emphasize the multidimensional nature of well-being. Therefore, programming to improve adolescent well-being will require a multisectoral approach, and the measurement of adolescent well-being will require multidimensional indicators that encompass all five domains and include both subjective and objective measures. It is for this reason that in addition to working toward a consensus set of health indicators, the multiagency Global Action for Measurement of Adolescent Health initiative led by WHO involves assessing indicators of adolescent well-being, with a view to agreeing on a core set of well-being indicators [20]. Conclusion Maintaining and improving the well-being of its citizens is the fundamental duty of all governments, supported by the United Nations, civil society organizations, private sector, families and communities, adolescents, among many others. This requires a clear definition and measurable indicators. Given the multidimensional nature of well-being, spanning five domains, it will be essential that multiple sectors unite behind the common objective of improving well-being, using a common set of definitions, concepts, and indicators. Here, focusing on adolescents, we have proposed the first two of these requirements—a clear definition and description of five domains that underpin a conceptual framework for adolescent well-being, whereas work continues on the development of the common set of indicators and the policy and programming implications of this framework.
Publisher:
Public Library of Science
(San Francisco, CA USA
)
ISSN
(Electronic):
2767-3375
Publication date
(Electronic):
20
September
2024
Publication date Collection: 2024
Volume: 4
Issue: 9
Electronic Location Identifier: e0003539
Affiliations
[1
]
Desmond Tutu TB Centre, Department of Paediatrics and Child Health, Faculty of Medicine
and Health Sciences, Stellenbosch University, Cape Town, South Africa
[2
]
Department of Infectious Disease, Imperial College London, London, United Kingdom
[3
]
School of Public Health, Faculty of Medicine and Health, The University of Sydney,
Sydney, Australia
Centre of Biomedical Ethics and Culture, PAKISTAN
Author notes
The authors have declared that no competing interest exist.
‡ DTW and MM contributed equally as first authors.
This is an open access article distributed under the terms of the
Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided
the original author and source are credited.
History
Date
received
: 15
May
2024
Date
accepted
: 2
August
2024
Page count
Figures: 0,
Tables: 1,
Pages: 15
Funding
Funded by:
European Union
Award ID: PANAF/2020/420-028
This work was supported by J.S. who received a Clinician Scientist Fellowship from
the UK Medical Research Council (MRC) and the UK Department for International Development
(DFID) through the MRC/DFID Concordat agreement, which sponsored this work. G.H. is
supported by funding from financial assistance of the European Union (Grant no. DCI-PANAF/2020/420-028),
through the African Research Initiative for Scientific Excellence (ARISE), pilot programme.
ARISE is implemented by the African Academy of Sciences with support from the European
Commission and the African Union Commission. The contents of this document are the
sole responsibility of the author(s) and can under no circumstances be regarded as
reflecting the position of the European Union, the African Academy of Sciences, and
the African Union Commission.
Categories
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Research Article
Subject:
People and Places
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Population Groupings
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Age Groups
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Children
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Adolescents
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People and Places
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Population Groupings
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Families
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Children
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Adolescents
Subject:
Medicine and Health Sciences
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Medical Conditions
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Infectious Diseases
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Bacterial Diseases
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Tuberculosis
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Medicine and Health Sciences
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Medical Conditions
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Tropical Diseases
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Tuberculosis
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Medicine and Health Sciences
Subject:
Diagnostic Medicine
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Tuberculosis Diagnosis and Management
Subject:
Medicine and Health Sciences
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Medical Conditions
Subject:
Infectious Diseases
Subject:
Bacterial Diseases
Subject:
Tuberculosis
Subject:
Multi-Drug-Resistant Tuberculosis
Subject:
Medicine and Health Sciences
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Medical Conditions
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Tropical Diseases
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Tuberculosis
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Multi-Drug-Resistant Tuberculosis
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Social Sciences
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Education
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Social Sciences
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Sociology
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Human Families
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Children
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People and Places
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Population Groupings
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Families
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Children
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Medicine and Health Sciences
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Pharmaceutics
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Drug Therapy
Custom metadata
Data Availability The datasets generated and analyzed during the current study are not publicly available.
The consent forms and study protocol approved by Stellenbosch University Health Research
Ethics Committee preclude publicly sharing the data. However, the data are available
upon reasonable request. Requests can be directed to the Health Research Ethics Committee
at Stellenbosch University (
ethics@
123456sun.ac.za
).
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