Negotiating boundaries of care: an interpretative phenomenological analysis of the relational conflicts surrounding home mechanical ventilation following traumatic spinal cord injury

Objectives: The aim of this study is to explore the phenomena of mechanical ventilation following traumatic spinal cord injury from three simultaneous perspectives; patients who require full-time mechanical ventilation (n = 8), their informal family carers (n = 8)and their formal carers (n = 11). We focus upon the intra and interpersonal challenges of establishing boundaries within the triad. Design: Qualitative study. Methods: Semi-structured interviews were transcribed verbatim and analysed using interpretative phenomenological analysis(IPA). In order to encapsulate the inter-subjective, multidimensional and relational aspects of the experience, we focused on recurrent themes which were independently reported across all three participant groups. Results: One major inter-connected recurrent theme was identified: 1) ‘Negotiating boundaries of care and finding a “fit”’. It centres around establishing a ‘line’, or a boundary, which was imperative for retaining a sense of independence (for patients), a sense of home and privacy (for informal carers) and difficulties balancing complex care provision with the needs of family members so as not to cross that ‘line’ (for formal carers).Conclusions: The findings highlight the need for focussing on a ‘fit’ within the triad, balancing boundaries of care in order to establish a productive, satisfactory psycho-social environment for all three participant groups to live and/or work within. Recommendations for both future care provision and future research are suggested.