What adolescents living with long-term conditions say about being involved in decision-making about their healthcare: A systematic review and narrative synthesis of preferences and experiences

Abstract

Interventions are needed to effectively train HCPs in the delivery of shared decision-making, and to support the participation of adolescents with LTCs in shared decision-making.

Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model

“… 48 , 49 Prior work has revealed that most adolescents want to be involved in their healthcare to varying degrees and often in ways different than what is currently occurring. 50 , 51 Perceptions about chronic disease and preferences for management and medical decision making are known to vary between adolescent patients and their parents. 52 , 53 Thus, seeking their input and addressing their specific needs are essential to building a care delivery model that is truly patient- and family-centered.…”

“I'd Like to Have More of a Say Because It's My Body”: Adolescents' Perceptions Around Barriers and Facilitators to Shared Decision-Making

“…While adolescents value their parents' support in the decision-making process, they often prefer parents to have a lesser role. Adolescents with LTCs would like the chance to see HCPs alone to discuss sensitive matters, but are rarely offered this opportunity (1,28). Parents worry about not receiving important information about their child's health, which they value over patient confidentiality (28).…”

“…Receiving a diagnosis of a LTC can change one's self-perception, triggering a multitude of emotions such as shock, anxiety, anger, fear and despair (31,32). Adolescents recognise that their involvement preferences change, and it is vital that they feel they have control over this, as failure to meet involvement preferences can be detrimental to their well-being (1). In line with the core elements of SDM and patient-centred care, clinical strategies that elicit adolescents' context and perspective, provide support, and offer tailored guidance have been previously identified by adolescents as enabling their behaviour to change (33).…”

“…Adolescents with long term conditions (LTCs) often feel as though they are left out of discussions and decisions with Healthcare Professionals (HCPs), which can give them the impression that their views are not important (1). Current recommendations emphasise the importance of involving adolescents in healthcare decisions, and state that health service provision should be a partnership between the HCPs, young persons and their families (2, 3).…”

“…Nevertheless, SDM does not occur consistently in clinical encounters, and adolescents with LTCs often act as bystanders (13,14). Furthermore, previous literature examining these encounters often focus on parents' and HCPs' experiences, omitting the young person's narrative (1,15). Therefore, the purpose of this study is to explore adolescents' perceptions and experiences, focusing on identifying the perceived barriers to, and facilitators for, their involvement in SDM.…”