Clinical decision making and the provision of information in PEG feeding: an exploration of patients and their carers' perceptions

Background: Government health care policy encourages a culture of patient choice and involvement in decision making, although the complexities and challenges involved in fully engaging patients in clinical decision making can be perceived as barriers to effective communication between the professional and patient. The present study aimed to explore the patients and their carers perceptions of the adequacy of the information provided and their subsequent involvement in the decision making process for percutaneous endoscopic gastrostomy (PEG) tube insertion. Methods: The study used purposive sampling. A cross-sectional qualitative design was utilised using semi-structured interviews, which were tape recorded. Sixteen patients and 27 carers were interviewed. The interviews were then transcribed verbatim and data analysis was undertaken using thematic analysis. Results: Only four patients and 11 carers reported having a choice in the decision for PEG placement, with only four patients and 10 carers, respectively, reporting they received sufficient information regarding the PEG. Poor communication, lack of information and inappropriate information, attitudes of health care professionals and exclusion were key themes for patients. Conclusions: Clinicians should develop interdisciplinary and participative practices to agree shared treatment goals and evaluate patient experiences. Consideration should also be given to the use of decision making models; in our opinion, the development of such a model, which supports interdisciplinary and participative approaches to decision making, is urgently required.