The unseen symptom: A longitudinal qualitative interview study exploring mobility loss in people with advanced cancer

TL;DR

This study explores how people with advanced cancer and their families experience and adapt to mobility loss over time, highlighting its impact on daily life and relationships.

Contribution

The study provides new qualitative insights into the longitudinal experience of mobility loss in advanced cancer, emphasizing its personal and relational dimensions.

Findings

Mobility loss disrupts identity, agency, and participation, leading to reconfigured family roles.

Coping with mobility change involves dynamic processes of reframing expectations and negotiating autonomy.

Participants often faced delayed or absent support, with unmet mobility needs overlooked by clinicians.

Abstract

Mobility loss is a common symptom in people with advanced cancer and is associated with reduced function and quality of life. While its physical consequences are well documented, less is known about how individuals and their families experience and adapt to these changes over time.

To explore how individuals with advanced cancer and their caregivers experience and respond to mobility loss.

A qualitative longitudinal study using Interpretative Phenomenological Analysis. Participants completed two semi-structured interviews, with follow-ups prompted by changes in mobility.

Twelve participants (10 people with advanced cancer, 2 caregivers) were recruited from hospital services, hospices, and cancer charities across England. Interviews were conducted 6–24 weeks apart in person, online, or via telephone.

Four interrelated themes were identified: (i) Fractured embodiment: Loss of the mobile self; (ii) Mobility as a cornerstone: Disruption to the fabric of daily life; (iii) Resisting and reframing loss of mobility; and (iv) Mobility loss: The unseen symptom. Mobility loss disrupted identity, agency, and participation, and led to reconfigured family roles. Coping with mobility change was dynamic and involved reframing expectations and negotiating autonomy. Participants often faced delayed or absent support, with unmet mobility needs frequently overlooked by clinicians.

Mobility loss in advanced cancer is not only a symptom of disease, but also a personal and relational disruption. Recognising it as a multidimensional experience underscores the need for holistic, anticipatory care that supports both physical functioning and the emotional realities of serious illness.

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