Navigating the Healthcare System With Chronic Illness: A Qualitative Study of Caregiver Experiences

Abstract

Background: Chronic illness management often requires ongoing self-care by patients, along with complex interactions with healthcare professionals. Informal caregivers play a crucial role in supporting individuals with chronic conditions; however, they often feel unsupported and overlooked within the healthcare system. Understanding the challenges caregivers face when interacting with healthcare professionals is essential for improving caregiver support and patient outcomes.

Aims: This study aims to generate new knowledge about how informal caregivers experience their role and navigate interactions with healthcare professionals in the context of chronic illness care.

Methods: We used a phenomenological hermeneutical approach inspired by Ricoeur's philosophy. Data were collected through individual interviews with eleven diverse caregivers of persons with chronic illnesses, focusing on their interactions with healthcare professionals. The interviews were analysed using interpretive methods to uncover deeper meanings in the caregivers' narratives.

Findings: Four main themes emerged, highlighting caregivers' interactions with healthcare professionals: Trust and tension in specialised care, Recognising the individuals behind the caregiver roles, The caregiver as translator and entrepreneur between patient and healthcare professionals, and The silent struggle of caregivers. Caregivers expressed trust and security in specialised hospital settings, but also frustration over inconsistent communication and lack of proactive support. They acted as essential mediators and entrepreneurs in the healthcare process, facing significant burdens. Caregivers also emphasised the need for more personalised attention and recognition from healthcare professionals.

Conclusions: Caregivers often serve as translators, advocates, and coordinators, underscoring the need for healthcare professionals to better integrate and support them. To improve clinical care, healthcare systems must adopt more inclusive practices, enhance communication, and value caregivers' expertise, guided by frameworks such as family systems theory and Habermas' system and lifeworld theory.

Keywords: chronic illness; healthcare professionals; informal caregivers; patient‐centred care; phenomenological hermeneutics.