[Subjective Care Needs after Tracheostomy: A Qualitative Study with Patients and Proxy-Interviewed Relatives]

Diseases that impair breathing through the mouth and nose often necessitate the creation of a tracheostoma. This procedure is linked to complex care requirements. The present study investigates deficits in care as perceived subjectively by patients with a tracheostoma.

A qualitative study design was employed, utilizing semi-structured interviews. Participants were recruited from a single center using theoretical and maximum variation sampling. For speech-limited and pediatric patients, their relatives were also interviewed. The interviews took place in the second quarter of 2024 and were recorded. The transcripts were then coded using thematic analysis, and the results were summarized into main themes.

A total of 33 individuals participated in the study (24 patients, including 2 pediatric patients, and 9 relatives). The subjective care deficits identified can be categorized into several themes: impairments related to the tracheostoma, lack of information about the tracheostoma, the desire for autonomy in self-care, social participation, provision of medical supplies, and navigation within the healthcare system.

The identified care deficits mainly pertained to the need for information, the challenge of finding tracheostoma-competent physicians and nurses, and issues related to social participation. In contrast, medical aspects of tracheostoma care were discussed less in the interviews compared to organizational and psychosocial challenges.