Existing 'In-Between': A Qualitative Exploration of Individual, Interpersonal and Structural Influences on Empowerment Among Young Adults With Chronic Health Conditions.
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BACKGROUND: Empowerment is a multifaceted construct conceptualised in different ways across the literature. Traditionally individual in its orientation, patient empowerment has more recently been acknowledged as also encompassing interpersonal and structural elements. As young adults with chronic health conditions enter the developmental stage of 'emerging adulthood' and transition from paediatric to adult care, empowerment may play a key role in supporting health management. OBJECTIVE: This study aimed to explore what empowerment means to young adults, and the facilitators and barriers that co-exist at an individual, interpersonal and structural level. Additional aims were to explore healthcare providers' perspectives and to inform how empowerment is framed in this context. DESIGN: We adopted a qualitative study design, drawing on phenomenology as a theoretical orientation and research methodology. SETTING AND PARTICIPANTS: Twelve online semi-structured interviews were conducted; six with young adults with chronic illness and/or disability, and six with healthcare providers. ANALYSIS: Thematic analysis was used to inductively analyse the data with a deep emphasis on reflexivity. RESULTS: Three themes were developed from the data: (1) Navigating healthcare in the 'in-between stage' of life; (2) 'I'm just adding to my tool kit': Stories of self-reflection, advocacy and knowledge gain on the pathway to empowerment; and (3) 'A safe space': Exploring how healthcare providers, interactions and spaces facilitate empowerment. The findings revealed that young adults with chronic health conditions encountered contradictory structural processes within healthcare systems that did not consistently equip them to self-manage their health, despite increasing expectations for autonomy and responsibility. Nevertheless, many demonstrated considerable agency, proactively acquiring the knowledge, skills, resources, and support necessary to foster empowerment and navigate the demands of self-managing a chronic health condition. DISCUSSION: Our findings emphasise the co-existence of individual, interpersonal and structural elements of empowerment, and the tensions that arise during the in-between stage of young adulthood. CONCLUSIONS: This study highlights that young adults require unique support to facilitate empowerment, with both barriers and facilitators in this process. Research should continue to privilege the young adult voice to improve empowerment outcomes and healthcare experiences for young people. LIVED EXPERIENCE CONTRIBUTION: T. A. K. acknowledges her contribution of dual expertise as a researcher and as a young adult with lived experience of cancer. PATIENT OR PUBLIC CONTRIBUTION: Young adults with varying chronic illnesses and/or disability were involved in the data collection stage of this project. These participants contributed their invaluable perspectives and insights through online interviews. Healthcare providers of varying professions were also involved in the data collection stage of this project, with their contributions being provided through an online interview. At the heart of this study are the voices of the participants.