Article summary:
- Adolescence and young adulthood are critical periods of development, characterised by identity formation, autonomy building, and navigating social relationships. For adolescents and young adults (AYAs) with chronic illnesses, these processes are compounded by unique challenges, including managing physical health, medical routines, and potential stigma.
- Internationally, between 10-12% young people live with a chronic health condition, such as diabetes, asthma or epilepsy.
- Chronic illness can hinder psychosocial development, heightening risks of anxiety, depression, and social isolation. These conditions frequently intersect with mental health challenges, creating a complex interplay that heightens vulnerability to stress, treatment non-adherence, and psychosocial distress.
- This article explores the multifaceted impact of chronic illness on AYA development and outlines strategies for psychologists to provide affirming, developmentally tailored care.
- By fostering trust, leveraging strengths-based approaches, and incorporating family and community support, psychologists can empower AYAs to navigate their health and developmental milestones.
- Emphasising culturally responsive, inclusive, and youth-centred practices, this article highlights the importance of collaborative care in addressing the complex intersection of chronic illness and mental health to empower AYAs to building meaningful, fulfilling lives.
Adolescence and young adulthood are pivotal developmental periods, marked by rapid physical, emotional, and social changes. For individuals managing chronic health conditions, these challenges are compounded by the unique demands of their illnesses. According to self-reported data from the Australian Bureau of Statistics 2022 National Health Survey, an estimated 3 in 4 (77%) young people aged 15–24 have one or more common chronic conditions (Australian Institute of Health and Welfare, 2024). In 2022, the most common chronic conditions among young people aged 15–24 in Australia were; short sightedness/myopia (28%), hay fever and allergic rhinitis (27%), anxiety disorders (26%) and depression (17%) (ABS 2023c).
Internationally, studies suggest 10 to 12 per cent of children are affected by chronic physical conditions with asthma being the most common, followed by diabetes, and then epilepsy (Thabrew et al., 2018). Less common long-term conditions include Type 1 diabetes, cystic fibrosis, congenital heart disease, Crohn’s disease, chronic kidney disease, muscular dystrophy, chronic pain and cancers (Thabrew et al., 2018).
Adolescence is a pivotal stage of development where attitudes and beliefs about health are established, shaping behaviours that influence well-being throughout life. This makes it a particularly challenging and crucial time for managing chronic health conditions (Russo, 2022).
AYAs with chronic illness may also be neurodivergent, as research has shown high rates of correspondence between neurodiversity and chronic illness, pain, hypermobility and fibromyalgia (Casanova et al., 2020; Ryan et al., 2023 Ward et al., 2023). This may add further complexity for psychologists working in this field who are required to consider another layer of individuality in their therapeutic approaches (Ward et al., 2023). Therefore, AYAs who present with co-occurring physical and mental health concerns can at times attract the labels of ‘too complex’. Organisations or services may consider such clients outside their scope, leading to some young people being unable to access the support they need (Queensland Health, 2023).
Case study example: John, a 19-year-old young man recently attended an intake session at the Mater Young Adult Support Unit (YASU) in Brisbane, Queensland. Navigating the grief and loss tied to living with Type 1 diabetes, he described a personal history marked by prolonged school absences, numerous hospitalisations, and medical procedures. Now, as he tries to balance a part-time job with the demands of his engineering degree, he finds himself struggling.
Adding to his burden, his mother is managing her own mental health issues, and his father has recently passed away. His social connections have been strained by his frequent absences and the difficulty his ‘healthy’ peers have in understanding his experiences. Financial pressures are also mounting as his work shifts have been reduced. Emotionally, he feels overwhelmed—his anxiety and depression growing as he falls further behind in his studies and becomes more socially isolated.
Impact of chronic illness on adolescent development
Adolescents living with chronic health conditions navigate a dual burden: managing the physical realities of their illness while striving to achieve developmental milestones, such as forming an identity, gaining independence and fostering peer relationships. Maurice-Stam et al. (2019) identified some key areas where adolescents with chronic illness face challenges including delays in psychosocial and psychosexual development, and fewer opportunities for paid employment. These delays can heighten feelings of ‘otherness,’ impact self-esteem and social integration and lead to heightened vulnerability to mental health challenges (Thabrew et al., 2018).
Chronic health conditions are associated with various challenges, including chronic pain, sleep disturbances, body image concerns, social isolation, discrimination, school absences, and academic difficulties (Russo, 2022). These challenges significantly increase the risk of depression, anxiety, suicide, and behavioural disorders. Furthermore, adolescents with both chronic illnesses and psychiatric disorders often struggle to manage their health, leading to poor treatment adherence and worse health outcomes. Balancing the physical, emotional, and cognitive demands of these conditions poses significant challenges for both teenagers and their families (Suris et al., 2004).
Assessment: enhancing communication and engagement
The HEEADSSS psychosocial assessment is a comprehensive, structured psychosocial screening tool designed to evaluate the overall well-being of AYA’s. The acronym stands for the key areas of focus in the assessment:
H - Home
- Explores the AYA's living situation, relationships with family members, and sense of safety at home.
E - Education/Employment
- Assesses school performance, attendance, relationships with peers and teachers, and plans for the future. For working teens, it evaluates job satisfaction and conditions.
E - Eating
- Examines dietary habits, body image concerns, and potential signs of disordered eating, food security, or nutritional deficiencies.
A - Activities
- Looks at the AYA's social life, hobbies, involvement in sports or community activities, and how they spend their free time.
D - Drugs/Alcohol
- Screens for substance use, including tobacco, alcohol, and recreational drugs, as well as the context and frequency of use.
S - Sexuality
- Explores sexual orientation, activity, relationships, contraception use, and knowledge about sexual health and safety.
S - Suicide/Depression
- Evaluates mental health, emotional well-being, and risk of self-harm or suicidal thoughts.
S - Safety
- Addresses exposure to violence, bullying, risky behaviours.
When working with adolescents managing chronic medical conditions, it is essential to actively listen and acknowledge both the AYA and family’s perspectives on the presenting health condition, including their cultural beliefs and/or healing practices (Russo, 2022). Incorporating tools like the Cultural Formulation Interview (CFI) from the DSM-5-TR allows clinicians to explore these views in a structured and culturally sensitive manner. Russo (2022) believes professionals could benefit from creating an ‘identity wheel’ during assessment or early in therapy to highlight key aspects of identity, such as race, ethnicity, gender, socioeconomic status, ability, nationality, and language.
Developmentally appropriate communication involves matching language, tone, and style to the AYAs cognitive and emotional maturity. Addressing different but overlapping aspects of adolescent care, The HEEADSSS psychosocial assessment framework (NSW Health, 2018) offers an evidenced based, structured yet conversational approach to exploring an AYAs world, from family and peers to education and health behaviours. This method allows clinicians to gather critical information while building rapport and systematically gathering information on family, peers, education, employment, lifestyle, gender, sexuality and health-risk behaviours. It encourages clinicians to start conversations with less emotionally charged questions and gradually transition to more sensitive topics. The framework can be used in conjunction with other formal diagnostic tools to inform a biopsychosocial approach.
Case study example: After a thorough intake session with John, several significant challenges to treatment adherence were identified, including lack of knowledge on dosing insulin to adjust for activity level, lack of attendance at diabetes review appointments, and parental disengagement from his diabetes management. John also shared that he has received threatening correspondence due to defaulting on his car repayments, placing his independent transport and credit rating at risk. Additionally, John presented with elevated stress and depression and poor coping mechanisms.
Collaborative goal-setting
Collaborative goal-setting allows AYAs to take an active role in their therapeutic journey, empowering them to identify achievable, health-centred objectives that not only respects their lived experience but also encourages a sense of agency. Clinicians should consider a dialectic approach, recognising that AYAs and their families are often doing their best to manage chronic conditions while acknowledging areas for improvement (Russo, 2022). Treatment goals may include helping AYAs cope with disease-related stress, improve treatment adherence, manage chronic pain, enhance health behaviours, address comorbid psychological conditions, develop communication and assertiveness skills, and promote independence in managing health (Russo, 2022).
Allowing adolescents one-on-one time with clinicians fosters trust, encourages open discussion of sensitive topics, and promotes autonomy in managing their health. The American Academy of Pediatrics recommends starting this practice around age 11-12, making it a routine part of care. It is critical that psychologists assess an adolescent’s competence to ensure they understand the therapeutic process and can provide voluntary, informed consent. Psychologists are encouraged to presume capacity for consent unless there is evidence to the contrary. Even when a young person is not deemed competent, their involvement in decision-making should be maximised, respecting their autonomy and right to confidentiality wherever possible.
Case study example: John and his YASU psychologist collaborated to identify several targets for therapy. Goals for therapy included improving coping skills for independently managing diabetes and relinking John with his Diabetes team, strategies for managing stress and improving mood, and improving assertiveness skills and teen independence with disease management. It was agreed upon that therapy sessions would occur via teletherapy to reduce any future transportation barriers. John was also referred to the youth legal team (LawRight) for support to respond to the default on his car loan.
Building trust and rapport in therapeutic relationships
Establishing trust and rapport is foundational in working with adolescents managing chronic health conditions. Building trust requires psychologists to demonstrate empathy, active listening, and an unwavering commitment to validating the young person’s emotions.
Creating a physically and emotionally safe environment is equally important. A welcoming space, whether in-person or virtual, can reduce anxiety and encourage open communication. Psychologists should respect the AYAs by involving them in therapeutic decision-making and maintaining confidentiality within ethical boundaries. Discussing the limits of confidentiality transparently can help foster a sense of safety and trust.
Developmentally tailored interventions (key elements of effective treatment)
Treating youth with chronic medical conditions can be challenging for clinicians due to the multiple intervention targets involved (Russo, 2022). The goal of treatment is to reduce barriers, facilitate coping and improve overall functioning using flexible, individualised approaches that prioritise both risk and protective factors. Since chronic conditions vary widely, a one-size-fits-all protocol does not exist. Instead, an individualised cognitive-behavioural approach that addresses the specific needs of the patient and family is most effective (Russo, 2022).
Key treatment elements include; disease and psychoeducation (often incorporating scheduling reviews with the AYAs treating medical team), activity scheduling and pacing to incorporate exercise, sleep interventions, adherence strategies, coping skills for managing illness related stressors, assertiveness and communication training, and defining roles to encourage AYA independence. Identifying protective factors, such as strong connections to family, culture, and peer networks, can buffer the psychological impact of chronic illness and is also important.
Navigating grief and loss
Adjusting to a chronic illness often involves elements of grief and loss—grief over the loss of a perceived ‘normal’ or ‘healthy’ adolescence, the ongoing limitations imposed by the condition (financial, physical and social) and the decline of positive self-image (Becker, 2022). It is crucial for treatment to distinguish between grief and depression in this context. While depression may require medication, grief often benefits more from social support. Additionally, antidepressants might not always be suitable as they could interfere with medications used to manage the chronic illness (Becker, 2022).
Addressing grief through a strengths-based framework enables AYAs to reframe their narratives, focusing on their capacities and achievements rather than their limitations. Additionally, it emphasises the importance of social supports, fostering meaningful connections, and discovering purpose within the grieving process. It encourages AYAs to have self-compassion by normalising grief responses and promoting self-care while guiding them to adapt and set meaningful goals that restore a sense of control.
Supporting identity formation and autonomy
Group therapy and peer support networks can play a pivotal role in identity exploration and autonomy development which can be disrupted by chronic illness. Sharing experiences with others facing similar challenges can reduce isolation, build resilience, and enhance self-esteem. For example, The Thrive program at Mater Young Adult Support Unit is an eight-week course designed to empower young people with chronic illnesses to foster social connectedness with peers and enhance their quality of life. Held weekly in small groups of 6 to 8 participants and led by a health professional, the sessions focus on developing life skills such as creating an identity, creating a healthy lifestyle, and coping with everyday challenges.
Incorporating family and community
Family and community involvement can provide a vital support network for AYAs managing chronic illness. However, this involvement must be balanced to ensure it empowers rather than overshadows the young person’s autonomy. Providing psychoeducation on age-appropriate roles, re-establishing responsibilities, and educating families in supportive communication techniques can help them navigate the complexities of chronic health management while respecting the AYAs independence.
Clinicians should also consider individual and cultural differences in family beliefs and dynamics when addressing these issues, tailoring interventions to align with their values and traditions.
Feedback and continuous improvement
Youth involvement in service design is crucial for creating accessible and effective mental health care. Feedback mechanisms, such as surveys, youth advisory boards and use of therapy session rating scales, provide valuable insights into the needs and preferences of young clients. By integrating this feedback into practice, psychologists can refine their approaches, ensuring they remain relevant and responsive.
Providing effective psychological care for AYAs with chronic illness requires an affirming, adaptive approach that recognises their unique experiences and values their autonomy. From building trust and tailoring therapeutic methods to fostering peer support and family involvement, psychologists can create a safe, inclusive environment where AYAs feel understood and empowered (Queensland Health, 2023).
By prioritising empathy, flexibility, and collaboration, psychologists can make a lasting impact on the lives of AYAs navigating the complex intersection of chronic health and mental wellness to support them in building resilience, achieving their goals, and living fulfilling lives.
References
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