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Self-management for adolescents with fluctuating chronic disease: time for a more holistic approach

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Living with a chronic health condition in adolescence frequently impacts a young person’s biopsychosocial developmental trajectory, especially their sense of self and strong desire to ‘fitin’. Healthcare providers have an… Click to show full abstract

Living with a chronic health condition in adolescence frequently impacts a young person’s biopsychosocial developmental trajectory, especially their sense of self and strong desire to ‘fitin’. Healthcare providers have an important role to play in supporting adolescents’ development of selfmanagement skills, increased independence, positive selfesteem, and healthy peer and family relationships. In the article entitled, ‘Selfmanagement support for young people living with fluctuating chronic diseases,’ Schoemaker et al highlight that young people with fluctuating chronic illness experience a duality of identity—an autonomous, selfconfident adolescent during healthy periods, and a more dependent one with loss of control during flares, and thus require a unique approach to selfmanagement skill development. This experience is not limited to adolescents with chronic illness. Many young people with marginalised intersectional identities (eg, sexual orientation, gender identity and socioeconomic status) also report the need to live ‘parallel lives’. Furthermore, Schoemaker et al outline the unique challenges and needs of adolescents with fluctuating chronic illnesses, particularly the functional and social aspects of daily living. Based on the evidence and their personal experience, the authors believe current selfmanagement programmes do not support young people with the unpredictability of flares and may even be counterproductive for adolescents with fluctuating disease. Furthermore, the authors describe that this population of adolescents with chronic illness have unique social experiences based on their disease status, choosing to interact with peers during their ‘good periods’. Adolescents with chronic illness frequently need support in developing independence not only in their medical care, but also in social participation, and identity development. Schoemaker et al reflect that current selfmanagement programmes focus predominantly on medical management, while role and emotion management are seen as equally important to adolescents with fluctuating chronic illness. The authors suggest future selfmanagement programmes support young people in expecting and managing flares as integral aspects of programming. They also cite acceptance and commitment therapy and social networks as two promising future adjustments to selfmanagement programmes. Schoemaker et al have done an exemplary job of collaborating with young people living with fluctuating chronic illnesses to highlight the importance of including role (eg, relationship building, goal development and independent living) and emotional (eg, selfesteem, selfacceptance and stress management) aspects in selfmanagement programmes. The more clinicians work together with adolescents and young adults to develop selfmanagement programmes, the better the programme will serve their unique needs. Collaborating and placing the young person as the expert of their care allows for a more holistic and patientcentred approach. Meaningful adolescent engagement is helpful not only for adolescentspecific programming but also for the development of a young person’s selfesteem, selfefficacy and sense of empowerment. Compared with their healthy peers and those with nonfluctuating chronic conditions, young people with fluctuating disease have unique challenges and are repeatedly forced to adapt to different states, often experiencing anxiety about the lack of predictability. As described by Schoemaker et al, the care of adolescents with chronic illness goes beyond their medical management, as the ongoing support of their emotional and cognitive development is critical. Table 1 summarised the key components to consider in developing selfmanagement programmes for young people with chronic disease which go beyond the medical management. The process of being admitted to hospital, being diagnosed with a lifelong illness and having to miss important academic, athletic and social events can be traumatic for adolescents with chronic illnesses and their families. Marsac et al describe this experience, noting that most children and parents will experience a severe traumatic stress reaction within the first month after illness or injury. They highlight the importance of traumasensitive care in supporting these patients and their families. The CARE approach (Choices, Agenda, Resilience, Emotions) outlined by Lerwick describes a framework for emotionally safer encounters. By using the CARE approach, providers can support the patient’s identity formation and emotional regulation by allowing choice, giving power back to the young person, communicating clear expectations with adolescents and families, using strengthsbased interviewing techniques, reframing negative thoughts to support resilience and normalising the young person’s emotions. Schoemaker et al makes an interesting suggestion of including ‘flare management’ as a principle in selfmanagement programmes, and perhaps young people should be supported in creating a ‘flare plan’ as commonly seen in asthma (ie, an asthma action plan). Education about flare management should include what flares may look like for a young person’s chronic illness, and that while some medications and behaviours can lower the risk of future flares, they are often related to fluctuation of disease that are out of the young person’s control. Proactive planning and support may help cognitively offload some of the stress that young people experience during their flares or relapses, leading to improved wellbeing during these uncertain times. Additionally, these plans can become more individualised as the young person gains greater skill and confidence in managing their illness, together with the support of their parents/ caregivers, if appropriate. Parent engagement and ongoing support, although in a different capacity, is important for many adolescents with chronic health conditions. The benefits of parental engagement in their child’s health are well described in the literature. In fact, adolescents who have positive parental/caregiver relationships, healthy open communication and perceived parental/caregiver support are less likely to report symptoms of Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada Temerty Faculty of Medicine, Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada Child Health Evaluative Sciences, SickKids Research Institute, Toronto, Ontario, Canada Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada ICES, Toronto, Ontario, Canada

Keywords: fluctuating chronic; young person; young people; selfmanagement programmes; management

Journal Title: Archives of Disease in Childhood
Year Published: 2022

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