The patient reported transformation of identity and voice in life-limiting illness

Individuals facing life-limiting illnesses undergo a profound transformation that encompasses significant physiological changes, in the level of medical care received, and a shift in overall goals of care. This transformation is irreversible and involuntary. However, individuals living with mental health conditions and life-limiting illnesses are not able to go through transformation due to diagnostic overshadowing. Previous research has examined the transformations experienced by caregivers in the context of spinal cord injuries, as well as by professional caregivers in palliative care, highlighting the complexities of their roles and the emotional adjustments they undergo. However, a notable gap in the literature exists regarding the transformation of individuals themselves who are confronting life-limiting illnesses.

This study explored the physical and psychological transformations of individuals living with a Life-Limiting Illness, focusing on how they interpret and understand these changes.

To explore this transformation, this study employed an interpretive hermeneutic phenomenological design, guided by an interpretivist-constructionist theoretical framework.

Fourteen qualitative interviews were conducted both face-to-face and via Zoom.

This study reveals that the illness trajectory of individuals living with a life-limiting condition consists of three stages, which can be metaphorically described as follows: (1) Chrysalis formation: This stage represents the muted voice, where the experiences of individuals with life-limiting illnesses are expressed and supported through the medical interventions provided by healthcare professionals. (2) Breakdown of the chrysalis: This stage is characterised by unsuccessful medical interventions and subsequent physical deterioration of the individual's health. (3) Emerging from the chrysalis: In this final stage, the individual forms a new identity and finds new meaning in life as a result of living with a life-limiting illness.

The voice of persons with life-limiting illness is not stagnant; it undergoes various transformations at each stage of the illness trajectory. An understanding of this transformation process, along with the new identities that emerge at each stage, is crucial for designing and delivering palliative care services that effectively and timeously address the unique physical, emotional, and psychological challenges individuals encounter during each stage of their transformative journey.