The Social Aspect of Children and Adolescents with Chronic Respiratory Diseases

Definition

Chronic respiratory diseases (CRDs) are common among children and adolescents. Asthma and cystic fibrosis are two main conditions that affect this population. Young patients face physical limitations due to structural and functional abnormalities of the airways and other lung structures. Moreover, the route of everyday life is influenced by responsibilities derived from treatments, and exacerbations imposed by the disease impacting silently their social life. To date, discussions in the literature have mostly focused on the physical limitations that face children and adolescents. On the contrary, social aspects are less investigated, even their important role in rehabilitation patterns. On this basis, we provide an overview of the social determinants that affect children and adolescents with CRDs in different social environments, such as family and school; discuss coping strategies that can be developed to attenuate the impact of CRDs on youngsters’ lives; and present the role of healthcare professionals and digital technology in social support.

1. Introduction

Chronic respiratory diseases in children and adolescents (CRDs) describe a range of clinical disorders involving structural and functional abnormalities of the airways and other lung structures. The global prevalence rate of asthma, the most common among children and adolescents, is estimated at 4.758 per 100,000 cases [1]. Cystic fibrosis (CF), primary ciliary dyskinesia (PCD), protracted bacterial bronchitis (PBB), and bronchiectasis are categorized under the umbrella of chronic suppurative lung diseases (CSLDs). These chronic respiratory diseases are characterized by chronic endobronchial bacterial infection and chronic productive cough [2]. The prevalence of CSLDs in European populations ranges from 0.2 to 2.3 per 100,000 cases, while in non-European populations, it ranges from 13.3 to 15 per 100,000 [3].

CRDs significantly impact airway and lung function, leading to various respiratory symptoms and complications. Chronic airway inflammation and mucus hypersecretion lead to narrowing and obstruction of the airways [4], while impaired mucociliary clearance results in recurrent respiratory infections and progressive lung function decline [5]. Similarly to adults, children and adolescents with CRDs face extrapulmonary traits, such as nutritional deficiencies and BMI abnormalities, low physical activity, psychological and social implications.

Nutritional deficiencies and growth impairments usually appear in these populations due to malabsorption, insufficient micronutrients, and limited nutrient intake [6]. In children with bronchiectasis, these factors, combined with increased energy requirements, lead to BMI abnormalities. Furthermore, a more declined lung function (Forced Expiratory Volume in 1st second, FEV₁ < 80% predicted) seems to relate to a lower BMI, while a better lung function seems to correlate to a higher BMI [7].

In addition, the BMI correlates with physical activity and sedentary time. It appears that children with CF who are less active and spend more time on sedentary activities present lower BMI and worse lung function compared to those who are more active [8]. Disease severity also correlates with participation in physical activities. Children and adolescents with moderate asthma seem to participate less in physical activities than those with mild asthma, as exercise may trigger their symptoms [9].

Apart from physical health, these conditions may have profound social implications. Social burden can be reported as a result of impaired health-related quality of life (HRQoL). Children and adolescents with CRDs, mainly those with CF, reported impaired HRQoL, specifically on subscales that referred to psychosocial health and emotional functioning [10]. Children are facing difficulties in keeping up with their peers due to physical impairments, making them inactive and socially isolated [11]. From parents’ perspectives, therapeutic interventions that involve family members and friends can benefit children, improving their physical activity and social interaction and making therapy enjoyable [12].

To date, there is limited data investigating interventions on the psychological and social spectrum of this population’s needs. In response to these considerations, in this entry, we provide an overview of the social determinants that affect children and adolescents with CRDs, especially in the school and community settings. Furthermore, we aimed to present practical coping strategies, supported by the literature, that can be implemented to mitigate the impact of CRDs on children’s lives, as well as the role of healthcare professionals (HCPs) and digital technology in their social support.

2. The Impact of Chronic Respiratory Diseases on Social Life

Compared to healthy peers, children and adolescents with chronic illnesses, such as asthma, feel loneliness [13]. A recent systematic review revealed that adolescents with asthma and CF are at a higher risk of discrimination compared to the general adolescent population. The nature of symptoms and the use of medication are related to bullying derived from peers and parents. Referring to discrimination types among adolescents with CF, denial of rights, unfair treatment, and marginalization are common phenomena [14].

Physical limitations that are often experienced by young patients with CRDs may lead to restricted physical activity. A slight reduction in moderate-to-vigorous physical activity is reported in children and adolescents with CRDs [15], apart from children and adolescents with asthma, who demonstrate comparable levels of moderate-to-vigorous physical activity with healthy peers [16]. The poor energy levels and symptoms (e.g., breathlessness, fatigue) may function as barriers to engagement in social, outdoor, and sports activities, which are crucial for social interaction and development [13]. Apart from physical limitations, school absenteeism and responsibilities related to treatment may prevent full participation in peer groups, restrict social interaction and development, and enhance feelings of isolation and loneliness. A qualitative study in children and adolescents with CRDs revealed changes in skills performance and attitudes towards play that function as an important factor in social development [17]. Play is not only influenced by the health condition, but also by the opportunities for play, limited availability of appropriate play equipment and spaces [18]. Specifically, changes at play can be provoked when children avoid participation in play under the fear of exacerbation or when they prefer to play alone or to withdraw from play [19]. Apart from these factors, social norms and support systems affect attitudes towards play. A cross-sectional investigation of children and adolescents with asthma revealed that a high proportion of their mothers restrained their engagement in play [20].

2.1. School Life and Education

The ability to focus in class, attendance, and achievements reflects the overall school experience. For example, adolescents with asthma reported difficulty focusing in class because of symptoms and medication side effects. Additionally, school absenteeism negatively affects attendance and academic achievement [21]. Frequently, regular school attendance can be disrupted due to hospital visits, exacerbations, and the need for rest. More than half of the students with asthma, the most common cause of school absenteeism, are absent from school due to illness [22]. School absenteeism may disrupt participation in school groups, having an impact on adolescents’ primary interpersonal relationships [23]. School reintegration is challenging. Parents focus on their children’s health status, and teachers are not ready to handle discomfort situations in the school environment, sidelining the role of reintegration in recovery [24]. Although teachers know about the disease of asthma, there are important gaps in disease severity knowledge and exacerbation signs [25].

School professionals’ knowledge and beliefs about youth with asthma are poor, and educational assistance is not provided, reinforcing the barriers to academic achievement [26]. In support of this statement, students with asthma characterized school personnel as “unsympathetic” to their condition or disbelieving of their symptoms or difficulties. Even though young people seek assistance from teachers when they feel unwell due to asthma, very few report satisfaction with the assistance they received [27]. On the other hand, adolescents with asthma try not to differentiate themselves from healthy peers and sometimes force themselves during gym classes, triggering asthma flare-ups [21].

2.2. Peer Relationships and Social Skills

Peer relationships are of primary importance in shaping behavior. In chronic pediatric conditions, peers may function as a source of support, have an impact on treatment adherence, and health-promoting or health-risking behaviors [28]. A recent qualitative study indicates that peer support is invaluable. Healthy peers support their classmates with asthma in many ways, understanding their friends’ health status, encouraging them to take their medication, consulting visit the school nurses, or taking a break during challenging activities. Furthermore, healthy peers update their classmates with asthma about given assignments or share school materials in cases of absences [21].

However, friendship is challenging in children with CRDs due to their physical limitations and absence from social gatherings. Therefore, adolescents with CRDs may adopt unhealthy behaviors that negatively affect their health status when trying to be accepted by healthy peers or prefer to become friends with peers who have the same disease diagnosis [29].

Nowadays, children and adolescents use social media for information and communication in an incremental way. During exacerbations, adolescents with CF communicate their everyday experiences with peers, and share information about therapies and prognosis, overcoming the isolation they may feel. On the contrary, they do not communicate with HCPs, doctors or nurses, using social media [30].

2.3. Family Role

Family characteristics affect children’s social aspects, psychological well-being, and HRQoL. High levels of distress, avoidant coping strategies, and low levels of family support are associated with poor psychological adjustment in children with CF. On the contrary, characteristics such as cohesiveness, expressiveness, and organization in families are associated with better psychological functioning [31]. Similar data are confirmed for families of adolescents with bronchial asthma. Furthermore, parents’ self-esteem and family functioning affect the relationship between adolescents with severe chronic asthma and their clinicians [32].

The characteristics of family functioning, either positive or negative, may repeat a similar pattern with HCPs. Better parental functioning positively affects the family’s ability to engage in a treatment alliance with a physician [33]. For example, parental involvement in diagnosis and treatment may obstruct adolescents’ adherence to treatment. In contrast, parents who prompt and monitor their child’s inhaler treatment were characterized as helpful [34].

3. Coping Strategies

3.1. Psychological Support

Apart from medical treatment, access to psychological support is essential in helping children and adolescents cope with the emotional burden of living with a chronic illness. Comorbid emotional and behavioral symptoms are stronger predictors of impaired HRQoL in children with CRDs, emphasizing the need for integrated psychological and medical care. For example, effective strategies for the management of asthma symptoms should incorporate psychological interventions to address mental health comorbidities and improve treatment adherence [35].

Limited up-to-date data are available concerning the coping strategies for children and adolescents with CRDs. Cognitive-behavioral therapy (CBT) and other therapeutic approaches can foster resilience and improve mental health outcomes. A systematic review highlights the effectiveness of psychological interventions, including CBT, in reducing anxiety and depression among children with chronic physical conditions [36]. CBT is recommended to be specifically adapted to intensively target psychological symptoms of anxiety, recognizing the overlap between somatic symptoms of anxiety and asthma [37]. Furthermore, CBT interventions for adolescents with CF concentrated on structured psychological skills training. Those coping strategies were organized into cognitive and behavioral domains, including cognitive restructuring techniques to identify and challenge self-defeating thoughts and problem-solving training to approach stressors systematically. The intervention also encouraged the development of adaptive coping styles while reducing reliance on maladaptive strategies such as distraction, social withdrawal, and resignation [38].

3.2. Family and Peer Support

At the family and parental level, coping strategies emphasized increased parental involvement in therapy sessions, alongside direct interventions addressing parental psychopathology such as depression and hostility, to reduce psychosocial stressors within the family system [37]. Family involvement is pivotal in managing CRDs in children and adolescents, significantly influencing their health outcomes and HRQoL. In particular, active family participation in disease management has been associated with improved adherence to treatment regimens and better health outcomes [39]. The COVID-19 pandemic posed additional challenges for families managing CRDs, as increased stress and limited healthcare access exacerbated the psychological and physical burden on both children and their caregivers [40]. Moreover, the pandemic significantly impacted the social aspects of children’s lives. School closures, suspension of extracurricular activities, and social distancing led to reduced peer interactions, limited opportunities for social development, and increased feelings of isolation. The substantial rise in screen time and the disruption of daily routines further contributed to the deterioration of children’s social skills and overall well-being [40].

Peer support groups are vital in enhancing the well-being of children and adolescents managing CRDs. Engaging with peers who face similar health challenges provides emotional support, reduces feelings of isolation, and fosters a sense of belonging [41].

Technology-based peer support interventions further extend these benefits by overcoming geographical and logistical barriers. A systematic review highlighted that such digital platforms enable adolescents with chronic illnesses to connect, share experiences, and receive support, leading to improved HRQoL and health outcomes [42].

4. The Role of Healthcare Professionals

4.1. Education and Advocacy

HCPs can play a pivotal role in educating communities, schools, and families about CRDs, providing clear information about the disease, its management, and its impact on daily life. For example, by advocating for standardized care practices and educating communities on the unique needs of children with bronchiectasis, professionals can help bridge the gap between diagnosis and effective management [43]. Similarly, for children with CF, healthcare teams often address a wide range of education-related challenges that affect school performance and social participation. Studies have shown that CF care teams frequently assist with school-based accommodations, including medication management and infection control, as well as developing individualized education plans [44,45]. However, many centers lack specialized educational support, underscoring the need for comprehensive resources and training for healthcare staff. HCPs can advocate for the integration of educational specialists within multidisciplinary teams, ensuring that the educational and emotional needs of children with CF are systematically addressed [46].

By fostering collaboration between HCPs, educators, and families, professionals can advocate for equitable access to resources and tailored support. This holistic approach not only empowers children and adolescents with CRDs to thrive academically and socially but also promotes long-term independence and well-being as they transition into adulthood [47].

4.2. School-Based Interventions

Implementing school-based interventions such as individualized education plans (IEPs) [48] and asthma action plans [49] can ensure that children with CRDs receive the necessary accommodations to succeed academically and socially. These interventions are critical as they help provide tailored facilitations that address the unique needs of each student, ensuring that they are supported in managing their condition in the school environment.

Asthma action plans, for example, are essential in guiding children, teachers, and school staff on how to respond to asthma symptoms or attacks [49]. IEPs, on the other hand, ensure that children with respiratory conditions receive specialized education services that may include modifications in classroom activities, extended testing time, or more frequent breaks to manage fatigue [50]. These plans are not “one-size-fits-all” but are personalized based on the child’s clinical characteristics, including the severity of their condition, controller treatments, and common triggers [51].

HCPs, including health educators, school nurses, and other medical professionals, play a pivotal role in the development and implementation of these interventions. The involvement of school nurses has been identified as a key factor in enhancing the effectiveness of interventions, especially when these are not individualized to children’s specific needs. Their collaboration with teachers, caregivers, and the child ensures that the educational setting becomes more inclusive and responsive to the challenges of children with CRDs [50]. Such tailored interventions not only improve school attendance and performance but also foster a sense of inclusion and well-being for children, reducing the social and academic barriers often imposed by chronic illnesses [52]. Moreover, by incorporating regular assessments and updates to these education plans, schools can provide continuous support as the child’s health status changes over time [24].

4.3. Community Programs

Community-based programs that offer recreational activities, educational workshops, and support services can enhance the social well-being of children with CRDs. Initiatives like the KidsTUMove project and “BREATH” play-based therapeutic exercise program create vital opportunities for social engagement, skill development, and empowerment, leading to improved HRQoL in young participants [12,53]. For children, being part of a community helps build a foundation for their future by fostering a sense of belonging, identity, and emotional well-being [54]. These programs allow them to interact with peers in a supportive and understanding environment, effectively reducing feelings of isolation and promoting a sense of acceptance [12].

Children participating in community-based therapeutic exercise reported increased enjoyment, social motivation, and family involvement, while parents observed noticeable improvements in their children’s coordination, endurance, and willingness to engage in physical activities [12]. The inclusion of siblings and friends made participation more enjoyable, reinforcing social integration. HCPs can also guide families towards local parks and facilities that support physical activity, which is a critical element since current community offerings are often limited [55]. Structured educational workshops can further aid children and families in managing these diseases through self-monitoring, medication adherence, and recognizing critical symptoms [56].

Moreover, the emotional well-being of children with CRDs can be greatly improved through community-based programs. Psychological resilience and self-confidence can be fostered through skill development experiences, such as learning self-advocacy in social and healthcare contexts. Reports indicate that children who participate in these programs experience enhanced empowerment, which positively affects their psychosocial development [57]. Programs that facilitate access to peer support groups and counseling services create safe spaces for families to share experiences and challenges, leading to reduced anxiety and improved self-esteem among participants [58]. The collective evidence underscores the importance of community programs in promoting not just the physical health of children with CRDs but their emotional and psychological well-being as well. Figure 1 illustrates the impact of chronic respiratory disease on the social life of children and adolescents, as well as the coping strategies employed across different social environments.

5. Conclusions

The social aspects of living with CRDs during childhood and adolescence are both complex and multifaceted. These conditions affect more than just physical health— they also shape emotional well-being and social development. Addressing these challenges requires a comprehensive approach involving families, HCPs, schools, and communities. Targeted interventions play a vital role in mitigating these impacts and promoting overall well-being. By fostering understanding, providing support, and implementing inclusive policies, HCPs can help improve the social experiences and HRQoL for children and adolescents with CRDs. Further research is needed to ensure that these populations receive equal opportunities for social integration and personal growth.