Transitions to adulthood: self‐governance and disciplining in the making of patient citizens

Abstract

Young people develop new behaviours and redefine their identities during health transitions when they move from paediatric to adult healthcare environments. Their identities help to guide their health‐related actions in response to life changes. Young people's health is increasingly recognised as important, yet we lack understanding of how health transitions shape identities and how they relate to other transitions to adulthood. We conducted a longitudinal interview study with young people with sickle cell disease to explore how young people define new identities as they transition to adulthood. We show how ‘disciplining at a distance’ via healthcare self‐management discourses and neoliberal norms governing adolescence play out in the tensions participants encounter when they are crafting new identities. Health transitions involve struggles to negotiate competing demands for self‐discipline. It is crucial to create enabling spaces for young people to protect their health while still developing identities that help them achieve life goals.

Understanding the health-care experiences of people with sickle cell disorder transitioning from paediatric to adult services: This Sickle Cell Life, a longitudinal qualitative study

“…We examined the world beyond the clinical realm and investigated wider aspects of young people's lives that affect their SCD transitions, such as education, relationships and work. 61 We adopted a 'slow co-production' approach 56 and involved patients as research participants and also as team collaborators (see Chapter 3) in an in-depth qualitative exploration that aimed to produce 'patientcentred knowledge'. 56,61 By engaging in this way, that is with young people's own experiences and voiced needs, we aimed to inform service provision that meets the NHS goal of providing 'patient-centred' transitional care 5,62 and to help inform global efforts to improve adolescent health.…”

“…Identities include ideas we form about ourselves and our bodies, as well as understandings of how we should behave, that can affect how we act in relation to health, [88][89][90] and this in turn can affect our health. Our in-depth sociological approach and conceptual framework, 61 which we present below, contributes to such understanding by locating health-care transitions in the broader social context of young people's lives and their transitions to adulthood. In doing so, we respond to calls for social science approaches to SCD and move away from research that has located the problem within internal (physical or psychological) characteristics of the person.…”

“…We contribute to this model by focusing on the role of identity development during transition. 61 Life-long health-related habits develop during transitions to adulthood. 101 Young people are urged to improve their self-management skills and health-related knowledge during this transition period.…”

Obstacles to use of patient expertise to improve care: a co-produced longitudinal study of the experiences of young people with sickle cell disease in non-specialist hospital settings

“…Many young people with sickle cell disease are able to call on their extensive expertise in their own condition and body, often bolstered by diligent self-monitoring and self-disciplining with respect to their health as they transition to adulthood (Renedo et al, 2019). As we have shown, however, their status as 'patient experts'experts in their condition and in their bodiesmay well be disregarded altogether in the non-specialist hospital setting.…”

Communicating and understanding pain: Limitations of pain scales for patients with sickle cell disorder and other painful conditions

“…Patients may adjust their pain communication strategically, further complicating adequate communication and understanding of pain, and potentially affecting treatment. For example, children with SCD report understating pain to avoid worrying their peers or parents (Atkin and Ahmad, 2001;Marlowe and Chicella, 2002;Miles et al, 2019;Renedo et al, 2020) or to avoid making a fuss at school (Renedo et al, 2020). Adults with SCD report concealing their suffering to avoid social alienation (Umeh et al, 2017).…”