The meaning of assisted feeding for people living with spinal cord injury: a phenomenological study

Aim. This paper is a report of a study to explore the meaning of assisted feeding through the experiences of people with high cervical spinal cord injury. Background. Eating difficulties are known to affect a person's self-image and transform social lives. Little is known about the experience of assisted feeding as a permanent situation. Method. Sixteen people with high cervical spinal cord injury were interviewed twice within a period of 18 months in 2005-2006. The second interview was combined with observation. Transcriptions of interviews and notes from the observations were analysed using the phenomenological guidelines by Dahlberg and colleagues. Findings. The essence of the phenomenon assisted feeding was described as a constructed pattern based on coordinated attention between the person with high cervical spinal cord injury and the helper. The constituents of the essence were: paralysis as a condition of life, facing the altered meal, reconciling with diminished bodily anchoring, sensitive cooperation between self and helper, realization of own values around meals, balanced use of meal-related devices and negotiating relationship with helpers. Conclusion. Assisted feeding should be adjusted to each individual person. Fixed procedures or routines should be avoided and assistive devices used with care. We recommend that continuity in the cooperation between the parties involved in assisted feeding is given priority, and that personal standard and social norms around meals are acknowledged.