Impact of persistent physical symptoms on the self: qualitative analysis of consultations and patient interviews.

Problem

Living well with persistent physical symptoms (PPS), sometimes referred to as “medically unexplained symptoms”, poses several challenges. In addition to the symptoms themselves, the uncertain and contested nature of PPS means that the relationship between illness and identity for patient is often difficult. Recent research described the ‘constant identity negotiation’ involved in being ‘illegitimately ill’. Attributing PPS to psychosomatic causes or dysfunctional cognitions may be particularly threatening to self-identity.

Approach

Multiple Symptoms Study 3 is a multi-centre trial of an Extended-Role GP intervention for patients with PPS. It includes embedded qualitative research to understand how the intervention works in practice. This uses data from both consultation transcripts and participant interviews; with triangulation used to combine findings from these complementary data sources. Analysis takes an inductive approach drawing on phenomenology and grounded theory. Coding is iterative and emergent themes and conceptualisations are discussed in regular analysis meetings.Here we describe an analysis of how patients describe symptoms in relation to their self-identity, which emerged from an open coding of consultation transcripts and participant interviews.

Findings

We identified three different types of relationship between symptoms and patient’s self-identity within the data. Each may have different implications for treatment: this is being examined in ongoing analysis.Symptoms with intact selfPatients describe their symptoms as things that happen to them, which have implications and make them feel a particular way, but without substantially affecting self-identity. Approaches aimed at challenging and adapting to symptoms (as in CBT) may be appropriate.Losing trust in the bodySymptoms are beyond the patient’s control, and the person no longer trusts their body. This has implications for how they feel and act, and is further complicated by their symptoms being contestable by others. Challenging beliefs and behaviours may further threaten the uncertain self. Approaches to validate the person and make sense of PPS may be appropriate before challenge and adaptation.The changed selfThe patient feels transformed by their illness, but the new self is not their “true” self or “real me”. Approaches which help the person re-find aspects of their “true” self may be an important foundation for work to adapt to and manage symptoms.These three relationships between symptoms and self appear to form a hierarchy, with potential implications for the content and delivery of care. Applying a mismatched approach may result in rejection of treatment by the patient.

Consequences

Patients indicate, through the way they speak about symptoms, the relationship between their symptoms and their self. We suggest that the patterns described here can help understand those relationships and has implications for the delivery of care to these patients.