Looking after adults with a percutaneous endoscopic gastrostomy (PEG) tube in the community : exploring the perceived needs of informal carers : a grounded theory approach

Abstract

Background The PEG tube is introduced to provide a means for feeding to those individuals who have an inadequate oral intake which occurs due to dysphagia or that are not able to get enough food through their mouth to maintain an adequate nutrition status. Informal caregivers are generally involved in the care of community-based individuals who are dependent on tube feeding. Objectives To explore the perceived support needs of informal carers of adults who receive enteral tube feeding via percutaneous endoscopic gastrostomy tube living in Gozo. Design This study adopted a qualitative approach based on in-depth interviews, drawing upon principles of Grounded Theory. Setting The study took place in Gozo. Data generation and analysis took place concurrently and iteratively. Participants Participants were selected according to a set of criteria. Seven female informal carers were interviewed. These informal carers were caring for a person that have become dependent on tube feeding. Methods This study used analytic procedures in line with grounded theory methods involving coding and constant comparison of data which lead to the development of a theory about the perceived support and the coping process involved. Results The perceived needs and support that the informal carers expressed during the interviews were explored.Three categories were elicited from the findings which were: the “ Perceived Impact of the new situation”, the “ Perceived Help or Hindrance from the social environment” and “ Adjusting to the new Role”. These categories have contributed to the emergent theory. Conclusion The support received throughout the new role was given a great importance by the caregivers and it was evidently seen that to be able to adjust to the new situation, support played an important role. Recommendations for practice and future research based on the findings elicited from this study are presented.