AIMS AND OBJECTIVES: To describe the self-reported life situation of users totally dependent on home mechanical ventilation (HMV) after tracheotomy and to identify factors associated with user satisfaction. BACKGROUND: HMV users are a small but growing group in society and among the most vulnerable individuals with chronic disabilities. The participants in the present study belong to an even more susceptible minority of this group, as they require round the clock ventilation at home through a tracheostomy, implying the need for continuous care. Their testimonies are important for the generation of new knowledge. DESIGN: A qualitative design using interviews. METHODS: Individual interviews were conducted with six participants and analysed by qualitative content analysis. RESULTS: The main theme that emerged different individual needs require a range of approaches was based on three sub-themes: (1) Tailored information (2) Sensitivity in decision-making and (3) Building trust and confidence. Information was perceived as crucial and participants described different experiences of receiving optimal information to not receiving information at all. Successful collaboration was perceived when the user was given the opportunity to participate in decision-making about her/his treatment and care, where to live and how to organise daily life. Trust and confidence in the caregivers were important. CONCLUSION: The participants highlighted the need for strategies to improve satisfaction. Their experiences varied depending on age, where they lived, who they encountered in the healthcare system and the level of family support. Our findings suggest that patients who perceive themselves as well informed at an early stage are more satisfied with treatment, decisions about their tracheotomy and their life situation. RELEVANCE TO CLINICAL PRACTICE: There is a lack of knowledge among healthcare providers, thus tailored, high competence and guidelines are required.
AIMS AND OBJECTIVES: To describe the self-reported life situation of users totally dependent on home mechanical ventilation (HMV) after tracheotomy and to identify factors associated with user satisfaction. BACKGROUND: HMV users are a small but growing group in society and among the most vulnerable individuals with chronic disabilities. The participants in the present study belong to an even more susceptible minority of this group, as they require round the clock ventilation at home through a tracheostomy, implying the need for continuous care. Their testimonies are important for the generation of new knowledge. DESIGN: A qualitative design using interviews. METHODS: Individual interviews were conducted with six participants and analysed by qualitative content analysis. RESULTS: The main theme that emerged different individual needs require a range of approaches was based on three sub-themes: (1) Tailored information (2) Sensitivity in decision-making and (3) Building trust and confidence. Information was perceived as crucial and participants described different experiences of receiving optimal information to not receiving information at all. Successful collaboration was perceived when the user was given the opportunity to participate in decision-making about her/his treatment and care, where to live and how to organise daily life. Trust and confidence in the caregivers were important. CONCLUSION: The participants highlighted the need for strategies to improve satisfaction. Their experiences varied depending on age, where they lived, who they encountered in the healthcare system and the level of family support. Our findings suggest that patients who perceive themselves as well informed at an early stage are more satisfied with treatment, decisions about their tracheotomy and their life situation. RELEVANCE TO CLINICAL PRACTICE: There is a lack of knowledge among healthcare providers, thus tailored, high competence and guidelines are required.