Falling together - a conceptual paper on the complexities of information interactions and research gaps in empathetic care for the dying

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.