Reaching a saturation point in thematic analysis is important to validity in qualitative studies, yet the process of achieving saturation is often left ambiguous. The lack of information about the process creates uncertainty in the timing of recruitment closure. This exploratory study was conducted to demonstrate a rigorous approach to reaching saturation through two-stage establishment of a codebook used for thematic analysis. The codebook development involved inductive analysis with six interviews, followed by a refi nement of the coding system by applying them to an additional 33 interviews. These fi ndings are discussed in relation to plausible pattern in code occurrence rate and suggested sample sizes for thematic analysis.

The findings indicate psychological reasons for disengagement with NIV. The threat to the self, the sense of loss of control, and negative views of NIV resulting from anxiety were more important to these patients than prolonging life in its current form. These findings suggest the importance of understanding the psychological dimension involved in decision-making regarding uptake of NIV and a need for sensitive holistic evaluation if NIV is declined. Statement of contribution What is already known on this subject? Non-invasive ventilation is widely used as an effective symptomatic therapy in MND, yet about a third of patients decline the treatment. Psychological disturbance generated by NIV use leads to negative experiences of the treatment. Decision-making about treatment potentials is complex and unique to each individual affected by perceived impact of disease. What does this study add? A decision concerning NIV uptake was influenced by perceived impact on individuals' sense of self. Sense of self was influenced by the maintenance of autonomy, dignity, and quality of life. Individuals' sense of self was identified to have been challenged by the disease, NIV, and their experience of health care service.

Introduction: Evidence is emerging that telehealth provides timely and cost-effective support for individuals with motor neurone disease (MND). However, little is known about the subjective 6 experience of using telehealth. This study was designed to examine the experiences of using 7 telemonitoring in patients with MND on non-invasive ventilation (NIV). 8 Methods: Semi-structured interviews were conducted with seven patients (five males; mean 9 age=63yrs; median illness duration=14m), who used a telemonitoring device for 24 weeks. 10 Caregivers were present at five of the interviews; they supported communications and provided 11 their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was 12 conducted to find overarching themes. 13 Results: Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, 14 Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions 15 were observed as a result of regular monitoring, contributing to both physical and psychological 16 well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could 17 reduce costs, save time and ameliorate hassles associated with attending hospital appointments. 18 Participants articulated that telemonitoring enabled symptom awareness and interpretation; the 19 device also enabled the participants to raise concerns and/or requests to the healthcare 20 professionals via the messaging system. Participants confirmed that the telemonitoring device was 21 easy to use, despite some technical issues.

This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.