Beyond “just speak up!”: How what people think, feel, and experience shape patient and caregiver voice in long-term complex care

Background: Patients and caregivers are often encouraged to “speak up” during care episodes, yet many hesitate for fear of damaging relationships with providers or affecting care quality. For people with multiple chronic conditions – who frequently navigate fragmented systems and have clinical vulnerabilities – understanding what shapes when and how they voice ideas, concerns, or preferences is essential for fostering partnership and enabling integrated, person-centred care for a population that seldom experiences it.

 

Approach: We share a theory of patient and caregiver voicing developed from ethnographic fieldwork in a long-term complex care unit in Ontario, Canada – a post-acute hospital setting for people with long-term, complex needs. In this setting, patients often rely on intensive support for daily activities and medical technologies such as tracheostomies and feeding tubes, and many experience disorders of consciousness. The unit’s environment, care model, rehabilitation programs, and social activities are purposefully designed to meet these needs. Caregivers (typically family members) are deeply involved, often spending many hours on the unit each day.

Over six months, more than 140 hours of fieldwork were completed, including observations of conversations and daily rounds, ethnographic interviews with patients, caregivers, and staff, and three semi-structured interviews. Using an inductive, iterative approach, we developed a grounded theory that reflects the factors shaping how patients and caregivers voice and the relationships among these factors. Two patient partners contributed to study design, analysis, and presentation to ensure the theory remained grounded in lived experience.

 

Results: Speaking up was far from straightforward: cognitive, emotional, and relational processes shaped both what patients and caregivers voiced and how they did so. Voicing centred on four domains: exploring care options, shaping day-to-day care, improving quality of life, and raising safety or quality concerns. The enactment of voice took various forms: informal communication at the bedside, speaking up when a threshold has been crossed, using humour as a buffer, providing generalized feedback, emotionally charged expressions, and the practice of silence.

Cognitive factors (e.g., perspectives on prognosis, expectations and evaluations of care), emotional factors (e.g., navigating emotions through illness and hospitalization, lasting impacts of previous negative healthcare experiences), and relational factors (e.g., how families make decisions together, perceived trustworthiness of staff) all played a role. The care environment – the culture of listening and use of communication tools such as translation services or augmentative and alternative communication devices – further influenced opportunities to voice. Together, these factors created the conditions that enabled or inhibited voice in complex care.

 

Implications:Understanding what shapes when and how patients and caregivers feel safe to speak up is essential for creating the conditions for partnership – a key enabler of integrated care. As more people live longer with multiple chronic conditions and transition across hospital, rehabilitation, and community settings, integrated care networks have an opportunity to implement consistent, trust-based mechanisms for listening and responding to diverse forms of voice. Doing so will enable all patients and caregivers to participate meaningfully as partners in care, while ensuring that their experiences translate into system-wide learning.