Abstract:
INTRODUCTION : Palliative care embraces the plight of patients and caregivers. Cognitive and
emotional empathy, empathetic care and the information environment at a time of dying
influence caregivers’ experiences of information interactions and emotional well-being.
Understanding empathetic care, and the need for empathy in caregiver information interaction
experiences in both palliative care and information behaviour, is still too limited. Visceral
autoethnographic sharing combined with other qualitative research methods may help.
METHOD : This paper intends to push the boundaries of research on the complexities of
information interactions experienced by caregivers in empathetic care for the dying. Themes for
further research are deducted from the subject literature, recorded experiences of caregivers, and
our own experiences and insight gained from dual sharing experiences as information behaviour
researchers and caregivers (i.e. collaborative autoethnography). We allow for etic (outsider) and
emic (insider) perspectives. Information behaviour, collaborative autoethnography, and the
philosophy of palliative care served as research lenses.
ANALYSIS : A cursory thematic content analysis was applied to the literature on caregiver
experiences, caregiver ‘voices’ on information interaction, the value of collaborative
autoethnography and our own shared experiences.
RESULTS : Key research themes include: caregiver sense-making in individual situated contexts;
conceptualisation of empathy and empathetic care; cross disciplinary collaborative
autoethnographic research.
CONCLUSION : Since conventional research designs alone cannot address the complexities of
information interactions, and there has been a failure to meet with the expectations of caregivers
at the time of dying, alternative designs such as inter-disciplinary collaborative autoethnography supplemented by qualitative mixed methods research must be considered.
